PTSD and Autism

cupcakeavatar3There was an article a while back that talked about autism mothers having brain scans that matched those of soldiers returning from war who had been diagnosed with PTSD.  It’s no shock to me that there is a link.  Trauma of birth alone can shock a woman to her core depending on the circumstances.  Then to nurture a child with your heart and soul only to have a doctor give a side glance and an autism diagnosis in less than 15 minutes time is yet another jolt.  It tends to isolate parents, who feel so alone because no one can relate. As a result, they often withdraw altogether.  Friends no longer call and invite you to parties.  Family members ignore or pretend all is well and avoid talking about your children.  You really are better off on a deserted island all by yourself,  at least you’d have peace and quiet.

When finally there is peace and quiet, you realize how deafening it is.  The loud buzzing in your ears, as if they are scanning the environment with the receivers cranked way up trying to detect where the children are that can’t be picked up.  It really is a frightening sound – silence.  One of those times when I didn’t hear anything and had hoped my little boy screamed himself to sleep for once, I found him standing on the windowsill of a second-story window that was wide open.  He wanted a better vantage point of the park behind our house and was pushing himself against the screen trying desperately to get a better view.  Below that window was a wooden picket fence.  It is not natural for the human body to go from a state of complete relaxation to an extreme sympathetic nervous response, especially on a regular basis.  PTSD?  Yeah, I’ll buy that.

When your child does nothing but self abuse, fight, and attack you, as well as others, it is no wonder that we have PTSD symptoms.  We are on a constant heightened alert.  When is the next disaster going to strike?  Will he go to sleep tonight, or will we be on a 72-hour, no-sleep marathon again?  Will he elope in the middle of the night while I am passed out cold from exhaustion and get lost or end up in the river?  And people wonder why autism parents are wound up so tight?  Really?  With the lack of funding in so many communities and even less support from family and friends, it’s no wonder some people crack under the pressure and assume it would be best to take their lives or the lives of their children.  It is not something that I recommend, but I can certainly see how people get there.

They get there from living in the trenches too long without support.  For single parents trying to do it all, or couples where one parent is off working multiple jobs to make ends meet, it is a constant struggle for most.  There is not enough support in the world sometimes.  Some people get financial contributions as support, which helps, but the emotional support is few and far between.  People typically only take notice when there is a tipping point.  When an overwhelmed parent is teetering and finally stands up and screams, only to be ignored by the room full of people, as if they were not even there.  Even better is when you’re then criticized for popping your cork.  It isn’t surprising that so many people turn to Facebook for a sense of unity.  We can all relate right?  It’s a bit of therapy.  But then naturally – you’re criticized for spending too much time there and not enough time disciplining your child.  It’s all more than enough to drive a person crazy.  So the next time you read an article about autism parents and PTSD or other trauma-related diagnoses . . . that will be me you hear screaming in the background.

~ Cupcake

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131 Responses to PTSD and Autism

  1. Mom says:

    I was enjoying reading this article and the comments, until I read a few stupid and unhelpful/ignorant comments. I’m out! 😡 😢

  2. Heather says:

    YES!!!! I told our family counselor that I felt like I was exhibiting symptoms of PTSD and this is exactly what I was telling her. If we have the same level of stress as combat soldiers, then it’s conceivable that we also have a form of PTSD related to the trauma of parenting children with special needs.

  3. Jazz Slater says:

    Needed to read this today…my son has adhd and tourette…and mild sensory…I am the tightly wound helicopter mom I never wanted to be. He is nearly 8 and has improved so much but the years of being on the front lines having judging eyes and uncertain feelings, sleepless nights, and anxiety have left there mark. I feel like the soldier returning from war who cant stop scanning the room for danger. In Gods time this will all come right but it is rough being in the trenches.

  4. Katy says:

    You seem like a very wonderful bunch of mothers! I am the mum of an 8 year old autistic boy, and we’ve been on quite a journey the last few years. We are now (the whole family) happy and thriving, but I very much relate to the PTSD, I read a book by Pete Walker on how to cope with CPTSD and it had me crying (and identifying).

    I have written a book, a short Dos and Don’ts for parents of autistic kids. It is gentle and humourous and filled with wonderful cartoons by an illustrator who is Asperger’s himself so really understands. If any of you would like to take a look before it gets published later this year, please let me know (is there a way to PM people on this site?) and I would send you the link! I would appreciate reactions and feedback from other parents who have had similar experiences.

    One more thing, judgements, self-blame and blame of others is not really helpful. We’re in this together. Try watching this wonderful presentation on yourtube, (about compassion and self-forgiveness)

  5. RM says:

    It was really hard dealing with my son with Autism’s behaviors- he also has a brain disease, and would get not only violent, but confused and delusional. Then having his sibling develop the same brain condition within a year was heartbreaking. Their difficult behaviors isolated us alot from society, and I had already endured so many years of ignorance, blame, and insults to my ability to parents by my spouse’s family. What really destroyed me was that nobody cared- my spouse had checked out and was constantly gone while still forcing me to work full time, so I came home after a strenous day to deal with extreme and even dangerous behaviors from both my kids, all on my own. My spouse simply choose not to be there 90 percent of the time. I had no one to help when things got out of control completely. Then my health started declining, my immune system tanked, I started getting stroke like episodes and losing memory and many other skills, due to all the unrelenting stress I was under and the fact I had gradually developed autoimmunity in my brain. When I had to go on medical leave because I found out I was really sick with a number of infections, my husband and his family gave me no sympathy. Then pile on top of that a major war with the local school district to get them to help my son, and scary retaliation against me by them, in particular one of his teachers who didn’t like me. I somehow pulled through and my kids’ health has greatly improved, but the scars are there. The other day I received a questionable email from this son’s current teacher and it brought me into a sheer panic that the whole thing was happening again. I was being set up again to look like a bad parent. I ended up crying non stop half the day, in a huge panic, though the teacher called me and had meant nothing bad by her letter. But I was already gearing up for war, ready to defend myself in any way I could. Some days I look at my spouse and feel nothing but all the abandonment and pain I went through all those years, especially when things get difficult. I completely withdraw because I can’t talk to him. Sometimes I am around his family and all I can think about how horrible they all were to me, when I needed help so badly. Some days I feel like I am carrying a thousand lbs on my shoulders, I started crying when something small sets me off, and I feel angry over the past. I cannot understand how my spouse and his family except friendship, love, and anything kind from me when I was ignored and treated like shit for all those years. When I tried to protest or speak up, I was humiliated and laughed at, and they acted like I was out of line for having feelings. Somedays, I want to walk away from all these people forever, but I stay because of my children. They are the only reason I am still around and the only good things in my life. I often wonder if I have PTSD, but nobody cares anyways, and it’s not like my doctor would listen to me if I said anything. Do I really want to share my story and end up crying hysterically in front of him? No.

    • ProfessorTMR says:

      *sigh* The PTSD is a real thing. One thing that you might want to consider that might help you cope at those times is a technique called EFT (Emotional Freedom Technique). There’s a book by Nick Ortner that makes it pretty simple called The Tapping Solution.

    • Heather says:

      RM – I truly hope you have received the help you so desperately need. You cannot do this alone. Seek the support of local agencies that are meant to give assistance and support to parents of children with special needs. Put your own oxygen mask on first! You aren’t any good to them if you can’t function. I can hear the desperation and defeat in your words. I’ve been there. Hugs.

    • Mary Jane says:

      I am a mother of an autistic child. I understand, it can feel overwhelming. God be with you, I hope you get a break and get to relax sometime. I only get a break when my kid is in school or goes to sleep. He has meltdowns sometimes and sometimes he’s fine. it’ kind of unpredictable. God be with you. you are in my prayers.

    • Pam says:

      Hi just read your post and it was describing my life is there a chance we could connect I could really use support

  6. Kristara says:

    I loved this post, but I’m feeling very affected now by CERTAIN people’s insensitivity.

  7. Ambri says:

    To those completely slamming the author for her feelings, shame on you, you apparently haven’t been in her shoes. I have, and I completely get it. For me, I am just now coming to the realization that my child has ASD, as her meltdowns and aggressive, violent behavior didn’t start until 2 years ago. Other symptoms were there early, but I didn’t know they were symptoms and didn’t really see the milder things as an issue. She’s a teenager now. I have had complex PTSD already from my childhood. I don’t blame her for it. However, her behavior triggers the pre-existing ptsd and is also adding to it. I’ve started having problems about my own childhood again that I had worked through and was doing well with. Now it’s back because I’m dealing with screaming and aggression toward me and holes in my walls, etc. I know i’m hypervigilant now with my own kid. Unlike other situations, I can’t walk away from her, nor do I want to. I want to do everything I can to help her and I will never give up, but emotionally and mentally I have a daily battle. It is a very complex battle that no one seems to understand. People’s advice to me about how to handle my child has been worthless, because they don’t understand she actually can’t help it. They don’t get the amount of stress I’m under or really, any of it. Added to it, I don’t have any help. Her father passed away of luekemia and I am completely on my own. I scream in my head a lot too. I have nightmares of epic proportions. Whoever wrote this…you continue to get your feelings out because you need to do that. I’m sure you’re doing a great job. As parents, we’ve got to do the best we can, and in some situations, you’re going to have strong feelings. It does not mean that you’re a bad mom. Mom’s like us have to have a lot of strength. Best wishes to you, and to anyone else caught up in this whirlwind of emotion and longing for a child you can’t have. I get it.

    • ProfessorTMR says:

      Ambri, I feel for you SO much. One way to immediately make some differences in your reactivity and begin to heal your past is to get the book The Tapping Solution by Nick Ortner and FOLLOW THE INSTRUCTIONS. If you can release some of this it can make an instant difference in your life. I wish you a great deal of luck. <3

    • AutisticHelper says:

      I suffer from PTSD from a sexual assault.

  8. Fighting Mom says:

    Autistic Helper I can’t even believe how insensitive you are. There are three things I want to address here.

    But before I do let me tell you a few things about myself so you son’t try and write me off. I have spent years fighting to change this world for my daughter. I have taken down insurance companies at the legislature, ran for office, and now I have my dream job working in a city administration. I have the privilege of spending every day changing a city so it is more accessible and inclusive to everyone in the disability community.

    On to my three items.

    1 – You have a perspective. Your life has lead you to understand things and see things as you have experienced them. You analyze situations and judge them according to this perspective. It is very ego centric to believe that your perspective is always the right perspective. Before you completely dismiss the experience of thousands of people you might want to step back and try to be in their shoes.

    2 – This narrative that self-advocates and parents are against each other is ridiculous. I want NOTHING more than for my daughter to be a self-advocate. Hell, I’d love her to completely yell at me for all the times I sucked as a mom. I know to flash-back detail all of the times I wish I was a better. Self-advocates and parents alike are trying to make this world better for individuals with autism. Working together we will get farther than manufacturing conflict because the needs of every individual with autism are different.

    3 – I have PTSD. I will give you two examples of how it affects me in a minute. But I want to start by saying I love my daughter more than anything. I would choose all of the difficulties again, including the PTSD it has given me, to be her mom. You can never ever accuse me of blaming my daughter for the PTSD this situation has caused.

    So now let me tell you about two situations – only a person with PTSD would react as I did/do. This is the type of reaction you see from a combat soldier when fireworks are blasting, etc.

    1 – Jefferson Memorial

    For anyone who has been to the Jefferson Memorial in DC you know what a nightmare it can be for an autism parent. The memorial is located along the Hudson River with a path ending in a giant concrete memorial with people everywhere, a million places you could lose a child and a giant body of rushing water with no barrier in front of it.

    Although my kids weren’t with me I was extremely hyperaware of EVERYTHING around us. I had severe anxiety along the path for her kids – which of course they were just fine. At the memorial I had to hide for a while trying to calm myself down. After I thought I was calmed down I walked down just in time to see my sister’s 2 year old start running towards the open river. Now my niece stopped running after just a few feet when she reached her dad and held his hand.

    However I completely lost it. I started bolting with an adrenaline rush and panic that only someone who has felt that type of panic understands. After I saw her stop I had to leave. I couldn’t handle it. I was shaking, was upset and couldn’t be in that situation anymore. I just walked away from my family and to the car.

    My sister and brother in law have been in Iraq and Afghanistan. Afterwards they told me that I was like a combat detail scoping out every possible danger and being hyper-aware of all of them. You cannot say this is a normal reaction for anyone.

    2 – Any situation that goes really badly

    This is a vague title but this happens enough that I can’t really title it as one situation. However I will use the example of what I just went through last night.

    We went to a dinner at a friend’s house. My daughter had never been to the house and there were a ton of people she had never met before. I knew this would be a hard situation for her but I also knew she would love what we were doing at the event. From the beginning of entering that door I went to that hyperaware state that I go to. Afterwards people told me they could tell I wasn’t “there”. I was so hyper focused that no one and nothing else mattered.

    When my daughter started having a hard time I tried everything to calm her down. We went into a different room. I pulled out my phone. I gave her some food she wanted. I knew this was a hard situation so I kept asking her if she wanted to leave and she kept saying “no”. She wanted to be there and I just wanted to make it possible for her. After 20 minutes of having a really rough time she settled down enough to sit at the table for about 5 minutes. At that point she left to go to the couch and play on my phone. At that point when I asked her if she wanted to go home she said “home”. Everyone there was understanding and accommodating. They understood the situation was understandably hard for my daughter.

    You’d think that I’d be use to situations like this. That afterwards I’d give her a lot of attention as I know it was hard on her and be fine. That is not my reaction though. After we leave a hard situation like this I cry for hours and am on the verge of tears for days. I run through how much more I want for her and overthink every possible thing I might have done to have improved the situation for her. I shut everyone out and just want to protect her from the entire world. I can’t really explain how badly it hurts when I go through this.

    I basically re-traumatize myself every time a situation like this happens. I spend hours and days thinking through every situation that has been really hard on her. I think about every time I wish I was better, how much I hate to see her hurt. I wondering what events/situations I should take her to and which I shouldn’t. I worry about how other people might be judging me and more importantly what assumptions they might make about her. I want to protect my sweet daughter from all of it and I want everyone to understand how wonderful and sweet she is. I hurt and I just want to make everything in this world better for her including myself.

    I know this could happen and yet I take her to event and situations that could be hard on her anyway. I know I could be triggered and just break down because I want her to have every great experience and maybe this time will be ok – because sometimes it is ok.

    An obvious question at this point is why am I writing all of this right now. Because this is legitimate. I am an extremely successful, loving mom and yet I have severe PTSD reactions. My PTSD has been created by experiences I have had that are unique to raising a child with severe autism.

    I want parents who are googling “autism parent PTSD” to read a comment like this instead of comments that try to vilify them. Comments that say because they have reactions like this they don’t love their child. Comments that say parents are blaming their sweet innocent children on experiences that are highly traumatic.

    Right now this is fresh in my mind because of last night. PTSD hurts in a way only those who experience it really understand. I don’t care who tries to create a story where I am wrong I know what I go through.

    To all the other parents who go through this too. My hats off to you for loving your child so much that you are this traumatized and hypervigilant. That you fight to do everything in your possible power to keep them safe and make this world better for them. Soldier on – I’m with you.

    • Karen Raba says:

      My husband and I adopted 2 1/2 years ago and the full scope emerged after adoption. We are trying now to get him tested (find a place that can and will). We had little background information and did not want to just label Autism as we question(ed) PTSD, ODD, RAD… . I do think ASD is an answer. Anyway… the screaming, him pulling out chunks of my hair, biting us and himself, grinding his teeth into our bones, slamming his head, amazing defiance and laughing and defying ever more strongly when redirected, slapping himself on an on and on…after-dark aggressive meltdowns that can last an hour ot two… . He loves us to bits. He is so smart and so bright and such a joyful kid… but the times I failed him…and I swear I have developed a constant twitch. Ever on high alert, indeed. I sonetimes hear him pre-meltdown stirring on his overnight monitor when he is at school. We have our battle plans ingrained now to help contain and resolve for maximium possible safety. He was FTT at adoption but growing now- 40 inches tall at age 7. About to become independent with door knobs.Can open sliding glass doors now. Pulled his long, solid wooden dresser over on himself Saturday morning. (Split open nose. Blood everywhere. No pain response. No danger response. He is back in a crib until Dad gets the furniture straps on.)) In the ‘quiet’ hours, I turn everything over and over and over in my mind. Why does it happen? What else or what differently can I do? Then, we have the medical appointments… . I am just begin to acknowledge the stress level.

    • Luna says:

      Thank you! I cried the entire time I read your response. I understood everything you wrote. I understood it because you practically described me. I have a 16-year-old son in the spectrum and everything you described very real to me.

    • Jazz Slater says:

      We went to a birthday party last week and Im sure I looked like a nut. Nothing really bad happened it was a goos day but my heart raced all through it. When he got too close to the presents I pulled him back because it reminded me of the time he started opening someones birthday gifts…when he got a little rough playing with the other boys I called him over to calm down…I knew how he could get if he was too excited. We drilled him on how to say he wasnt hungry if he didnt like the food instead of yelling it was disgusting…we reminded him that he couldnt transform into anything(robot,dino,bird). I walked the party like a police officer…on the way home I didnt cry but thought of a million things that the other parents may have thought…or did he have fun or did he fit in enough. It isn’t normal to second guess everything you do…luckily my mom is very supportive and my husband does his best too.

    • Nancy says:

      Thank you so much for writing this…sometimes knowing that someone else has felt like I do makes me feel not so different..not separate…but connected to others who’ve experienced our own unique experiences

    • Jo Ma says:

      Wonderful! I am so glad that there are parents like you in the world, that love your children so much and care about them so that you hold their hand through lifes good and bad experiences. That you are there for THEM, you CARE!
      Thank you

  9. KO says:

    I’m a mother raising a severely autistic son. I have been medically diagnosed with Chronic PTSD. Let me assure you, I do NOT blame my child’s autism for this diagnosis. The PTSD comes from the chronic panic, despair and fear for my child’s safety during self-abusive meltdowns where there was inadequate supports and services. Add to that, when we got state funded services, they were often unreliable and shockingly inept. Some caregivers turned out to be secretly abusing our child, others were no shows, lazy, lacked compassion and/or were poorly trained, despite professionals assuring us and other families that we were getting quality care.

    Add to that parents of autistic children are dealing with a battalion of professionals who claim to be autism experts, but seldom know anything about autism and waste years of your life giving you absolutely nothing helpful, leaving you more frustrated and alone

    Add to that trips to the Emergency Room, where nurses and doctors had zero understanding of patients with autism and treated him like a psychiatric patient, overmedicating him with toxic antipsychotics that caused an olygiric crisis, torticollis and retrocollis. A total nightmare. Traumatizing and depressing. You go places expecting to get help only to find out they have no clue how to help people with autism because they blame all the behaviors presented on autism, instead of doing medical investigation to rule out underlying medical issues fueling the acute behavioral metldown. We have since learned better to allow this to happen again. And we continue to educate medical professionals. Most want to know more. And want to help. But it’s always a battle. We do not live in an autism friendly society.

    . Add to that a system serving autistic people that lies to the public about budget cuts, making parents already under extreme stress from sleep deprivation and fear for their child’s health and safety, have to fight long, brutal court battles to get the basic services people with autism need so they can be free from self-harm, have the right to prompt medical care and be treated with respect and dignity. These agencies get billions from state and federal funds. So we now know all these lame ass excuses about budget cuts was a con game.

    So, no, I don’t blame my autistic son. It’s not his fault he has autism. He deserves compassion. Respect. Support.

    My PTSD is deeply rooted in the long advocacy battles I’ve fought to get others being paid to do a job, to do their damn jobs and provide him and our family the QUALITY supports and services my son needs.

    Case law clearly shows benign neglect and apathy towards families raising autistic family members is a national crisis. It leaves broken hearts, fractured minds, fear, mistrust, anger in the lives of so many just asking for others to do the right thing to bring relief and support to this vulnerable, delicate population.

    Yes, the loud screaming, self-abusive meltdowns and episodic seizures, trips to hospitals and public meltdowns are stressful. But my mindset has always been compassion towards my son. His challenging behaviors are not his fault. And it’s against the law to discriminate against autistic people based on their degree of autism.

    Nobody can blame my son’s severe autism for my PTSD and if they did, it would illuminate extreme ignorance and intolerance to the global picture of getting the supports needed to help ease the burdens in raising a child with severe autism.

    The best we can do is parents is fight hard for our children’s right to be part of the community. To be free from self harm. Get prompt medical treatment. Not to be overmedicated. Receive adequate staffing supports and services.

    Hugs and love from a mother with CPTSD. And by the way, I don’t let this diagnosis define me in the same way I don’t allow people to look down on my son because he has autism.

    I also take umbrage that men under extreme stress who have PTSD aren’t judged as harshly as mothers of autistic children with PTSD. How interesting.

    All in all, we are more than labels. We are all here together fighting our battles, trying to survive in a world most don’t know even exists. Let’s try to help and support each other with compassion, understanding and advocacy. Advocacy is what changes things. It gets you the support you need for your child and your family and can make a huge difference in your stress level.

    • Linda K. says:

      I have had Complex PTSD since childhood from living in an ongoing abusive and explosive situation. I didn’t know I had it until about 10 years ago, after having it for a good 35 years. I can tell you beyond a doubt that I have had the same reactions to our son’s autism as I did to the original situation that caused my PTSD. I found myself comparing our son to the original person (who had some severe mental illness stuff going on) and initially I didn’t understand why. I also hated myself for making that comparison because he is nothing like the other person. But there I was reacting the same way. It took a few months for me to get to the bottom of things and figure out why. Thankfully that understanding has helped me immensely. Do I blame my son for my continued PTSD? Never! Every single day I give him my all to help him be as successful as he can be and to prepare him for the rest of his life. The good thing is that I know what’s going on, what triggers me, and what I need to do in order to calm the situation. Now, do I think that every autism parent has PTSD? No. Every person with autism is different. Every situation is different. But there absolutely is a portion (and it wouldn’t surprise me at all if it was the majority) of autism parents who suffer from PTSD and anxiety disorders because of the autism, plain and simple. It’s not right or wrong, it’s just reality.

  10. AutisticHelper says:

    Call your predicament anxiety or whatever, but do not accuse your Autistic child of giving you trauma you don’t have.

    • ProfessorTMR says:

      ?????? No one is “accusing their autistic child” of “giving” trauma. That does not mean for an instant that there is NOT trauma associated with the raising of many autistic children. Many people with autism are “high functioning” and cannot imagine for an instant the kind of difficulties inherent in having a child who is at the other end of the spectrum and cannot communicate. 49% of autistic children “wander” from safe settings. Imagine for an instant what it’s like to turn your head for an instant (NO parent can be extra-vigilant every moment of every day, which hypervigilance, by the way, is a hallmark of PTSD in itself), or finally drop off to sleep after being awake most of the night, only to find that your child has “bolted,” possibly undoing three difficult locks and climbing a high fence. If you’re lucky, that JUST results in “trauma” and not your child’s death. But even if you were “lucky,” it only means that you will live in anticipation of “next time.”

      Sorry, but no matter who you are, you don’t get to determine someone else’s “trauma.”

      • AutisticHelper says:

        You can have horrible anxiety from the situation but not Ptsd. Ptsd is not solely looking for danger, the two other symptom categories of avoidance and reexperiencing are just as significant.

        Since you too believe you have the hyperarousal/sensory overload from Ptsd , then maybe you should take time to understand the situation of your child better. That but ten times worse is what it is like for a person with Autism Spectrum Disorder. Hypervigilance is a general term which includes hyperarousal,but it also included general anxiety, searching for danger, etc.

        The fact only one vague symptom is mentioned up until now tells me that it is indeed a lie.

        The fact you mentioned a vaccine conspiracy tells me these people are struggling to grasp critical thinking.If I did not vaccinate my child, then they would catch a horrible debilitating disease, some of which can cause mental retardation. This is scientifically proven, along with the fact vaccines do not cause Autism. I know you people might not care if this would happen to your child.

        Trauma by the book definition, as to have Ptsd you need these traits which will later fit a diagnosis and a definition of Ptsd if you have it with no diagnosis : experienced an event which was life threatening, threatening to the integrity of the self, threatening to body autonomy.

        No you did not tell me that you blame your child, but in my opinion, it is heavily implied if you insist on such a drastic effect. You say you do not blame your children, but that is a cop out lie
        since obviously your child is the source of the anxiety, but not the blame. Your child being the source must equate to blame for you.

        If these people have undiagnosed Ptsd, then they need a doctor and a diagnosis.
        It’s an awful yet treatable condition if you get C.B.T therapy and medicine.

        Your child is a person. Maybe if you people did not obsess over not having a child to posit as an extension of yourself and stop deciding on standards of comformity, looks, social skills, intelligence to define someone’s worth you would be happier and your child would not want to run away from you. You should accept your child.

        Some people with autism have Ptsd from parents taking them to poor methods of therapy to ‘rehabilitate’ them from Autism. Autistic people can have Ptsd too, so no, your presumed diagnosis does not make you more human than your child.

        There are too many echo chambers on the Internet where differing opinions are not allowed or the same opinions are repeated . This is Autism Speaks, and several websites of predjudiced mothers.

        If you do not know the symptoms of Ptsd, you do not probably think A.S.D symptoms count either, and your definitions of Autism Spectrum Disorder are therefore incorrect or by a stereotype. You do not even understand why your child does things, they are just an angry,unempathic, spoilt, unfeeling, pandering annoyance who apparently does not understand anything at all and is a disappointment to you. Do you think you would feel happy if someone treated you this way?

        Mothers in some countries are drowning their children because they are iautistic, due to vaccination theories. Do I pity them? No, because I would never want to kill someone because it is barbaric and cruel. They did what they did by choice and free will. I hope they are in jail like all the other murderers, because they are immensely cruel and they deserve it. I wonder if they know how it feels to drown, that their child had feelings too. Remember the Holocaust? This is the result of human predjudice, you cannot deny it that ordinary people contributed and validated to such. We used to segregate and enslave black people and burn people because they are witches, I repeat, burn people. If this is how far histrionically we have gone, then please, accept the differences in others.

        I think that is all egotistical vanity and nothing more.

      • ProfessorTMR says:

        Sorry “AutisticHelper,” but YOUR opinion as to what constitutes trauma for someone else is completely and utterly beside the point. YOUR trauma is not someone else’s and vice-versa. You wish to discount other people’s experience for some reason. I suspect it is you find it threatening to acknowledge that many parents of children with autism ARE suffering from PTSD.

        I do not have a child with autism, but I did have a child who died and I am quite familiar with the symptoms of PTSD as a result. I can assure that many friends of mine who ARE parents of children with autism have experienced VERY similar symptoms, many of them having faced a number of episodes where their and/or their children’s “bodily integrity” were indeed threatened. I do not “blame” my child for causing my PTSD. Neither do my friends who are parents of children with autism blame their children for their PTSD either. Could these people avoid PTSD by “interpreting” their situations differently? Perhaps. But much of PTSD comes about because of a physical phenomenon of overloading the body’s reflex circuits, which is an automatic phenomenon, meaning it is not controlled by the conscious mind. Blaming the parents for their physical reaction to the threats to their children’s bodily integrity is as ridiculous as blaming the children for it. (And as ridiculous as blaming soldiers for their combat-related PTSD.)

        You may want to ask yourself why you are so determined to ignore the very real stress and trauma that these families are under. What do you get out of pretending that their trauma never happened?

      • AutisticHelper says:

        I get the benefit of helping people treat people with autism with kindness, rather than traumatising monsters. I am sick of predjudice in this world of autistic people.

      • ProfessorTMR says:

        So in your eyes my dead son is a “traumatizing monster”? Do you realize just how “unkind” that characterization is to both him and myself? We here at TMR completely and FULLY agree that people with autism should be treated with kindness, but we ALSO believe that their (often traumatized) parents and families should be treated with kindness as well. That’s the part you’re leaving out.

      • Jlynn says:


      • ProfessorTMR says:

        Autism is not a trauma to YOU. You don’t get to define the experience for anyone else. For example, many children have peanut allergies to the point where they get some symptoms some time after peanut is ingested, while others are repeatedly sent to the Emergency Room in anaphylactic shock. Does the parent of one of the first children get to tell the parents of the second group, “You’re not experiencing trauma!”? Of course not. YOU don’t know THEIR experience. It has been made clear on this page exactly how autism can create traumatic stress for a parent. Just because you choose to ignore it, doesn’t invalidate the truth.

        And we’re well aware here that autism is a neurological disorder. That doesn’t for a moment suggest that it isn’t greatly affected by environmental factors (it is, as is evidenced by study after study after study), one of which happens to be vaccines (at least 80-something and probably more like 540 cases of autism have been compensated by the Vaccine Injury Compensation Program, far more than would be likely if the vaccines had not caused the autism). By the way, Autism Speaks is more concerned about keeping up high contribution levels than helping children get well and gets it wrong as often as it gets it right. Even the founder Bob Wright, has become more outspoken about the vaccine link in recent months.

      • AutisticHelper says:


        Much insightful renditions of thought processes. Much strip me bare.

        Such genius, so considerate, very minimise, much Histrionic.

      • Betsy Kantrowitz says:

        You are fortunate that your son is high functioning and sweet. My 13 year old son is verbal but moderately autistic. He also has a separate diagnosis of ADHD because it is so severe, Dandy Walker Variant, tic disorder, anxiety disorder etc. He was violent from a very young age. He also has a digestive disorder. At 4 years old he spent 6 weeks in- patient at a feeding program at Children’s Institute in Pittsburgh. They had to have a nurse with him 24/7 because of his extreme behavior. I had begged my husband when he was younger to start him on meds. because his behavior was so extreme but he worked all day and just blamed my parenting. The Psychiatrist at the feeding program finally talked him into allowing meds. Even on meds he was extremely challenging. His room was covered with holes that my husband had to patch and we had to put up a wood guard on the corner near his door where he dug with his nails down to the wires when he was a toddler. It was so extreme I tried to kill myself (the one and only time I did this) when he was 4, before he spent the time at the feeding program, by over dosing on ambien. I had/have chronic insomnia since he was born,tons of stress, and also was in pain because of back labor with him that herniated disks, plus I found out I was BRCA2 positive a little before he was 2 years old and had to have bilateral mastectomies/reconstruction, and my uterus and ovaries removed because my maternal side had such a high incidence of breast and ovarian cancer. Add to that my husband found out he had stage 3 testicular cancer when my son was 2 weeks old and I had to also get him to the hospital for radiation/chemotherapy and surgery during a year of treatment. I still have to be on sleep meds. but luckily the doctor found one that has no side effects for me but anytime my husband or son raise their voices in anger (too often) I cannot handle the noise and emotions and feel a strong need to escape. My son is on about a half dozen meds to control his ADHD and stabilize his moods. How can you say I do not have PTSD? I have not gone to a psychologist to be diagnosed its enough with what I already am dealing with and I have refused to seek help despite family trying to get me to go because I do not feel that I can deal with any more. We have also just moved to a different state. Autism is a wide spectrum. You are lucky to have a relatively easy child and life experience but do not generalize to others. Life can be harsh.

      • Thank you Professor TMR… my gosh someone finally knows and gets it. Most people that have children on the spectrum are on the high functioning part of Autism or the family members that have a friend or family member on the high end has NO IDEA what it’s like having a child on the Lowest part of the spectrum . SDD w/Autism is what my son has. He is significantly developmentally delayed with autism. He is 11yrs. Old and has the mentality of a 3 yr old and is Non Verbal. He has eating issues. I have to purée all his food . And he has allergies so he’s on a specific diet because he has esophageal problems and GI tract problems along with extreme meltdowns. Banging his head through the walls kicking screaming biting and it’s normally always in public. He is great at breaking out of the house while I’m in the shower or sleeping because he was. I try to sleep when he does. But I’m so exhausted that I don’t hear him get out. That’s been my worst fear of the 4 times he got away. Only to be treated like a abusive mother . Because the question is where were you or what was you doing when he got out??? We have a wrist bracelet that reads known wander Autistic and Nonverbal. I started taking video of him having these meltdowns because I felt I needed to protect myself from being accused of harming my son. And so I could show the DR so she could see what I was telling her. And thank goodness I did because the school called Dfacs on me for bite marks and bruises on him and if not for those videos I believe I would not have went home with him. Those videos saved me. And also the accident we were in because he wanted me to stop to see a big John Deere tractor but we couldn’t . So he started screaming and kicking the seats. And I said Mama will take you to sit on one when we get home. And the next thing I know was I thought someone had shot me in the back of the head as I was approaching a intersectio.but it was his big iPad with the heavy case on it to protect the screen that he through At the back of my head scarring me to death and going straight thru on to a one way road and got hit on my side of the suv. And totaled my vehicle . My son ended up with. Bruise on him from the seat belt and that bruise was one of them that was in question with the detective and at Dfacs. So I showed pictures of the totaled suv and the ticket as I was charged for the accident. The officer felt bad for doing it as he could tell that my son acted way different than your typical child. And he wasn’t listening to me and kept trying to get in the road. I had to ask the officer if he could kindly use a stern voice and ask him to sit by me and not get up. He looked at me like I was crazy. I said sir he doesn’t listen to me first of all and he’s upset about the accident and is Autistic. And he said yes Ma’am I sure will. And so he did and Jace never got back up. It’s so so hard to go anywhere in public because he doesn’t mind me and will have a meltdown every time. So I try to get everything done while he’s in school. But not only am I dealing with my son who I love dearly and it breaks my heart to know he will never be like other children and I pray for therapy or therapist that can help him. But being divorced for 4 yrs now and my ex not paying child support or getting him for visitations to give me a break for just a day has never happened. I’m disabled by a bladder disease and I now have so many other medical problems because all my time and energy and money goes to Jace. I have no help with him at all . It’s just me and him. And pureeing his food cost $600 to $800 a Month because he doesn’t lnow how to chew and is afraid of something solid in his mouth. I tried to get food stamps and was denied. I tried to get Medicaid to go with my Medicare to help pay for my $300 a month in prescriptions and get dental because of the acid reflux I have from stress eats the enamel off my teeth . And . need vision as well but was denied Medicaid and I just thought to myself oh gosh we are going to have to move into a shelter because I’m being denied every resource I can find and even with the housing authority was denied. But finally the good lord answered my prayers and I cried and laughed for 2 days just thanking god that we got accepted in a program that pays half of your rent for 2 yrs to help you get on your feet. Only to learn that you had to take classes 2 days a week for a month from 10am to 12 noon. And I called and said what can I do school is out May I bring my son as long as he doesn’t interrupt and she said no that wouldn’t be fair to the other parents . And I said I understand that but I don’t have the option of just going to any daycare and dropping him off he’s special needs and they are not licensed for that. And they said well sorry you will have to wait until next year. I begged them to please don’t hold my sons disability against us having a place of our own. And I was so desperate I said what if I asked the other parents if they would mind and she said sorry we can’t make special exceptions for you. And as I was crying I asked is there any parents in this class that has a disabled child ?? And she said no they have family watching them or daycare and I said but I don’t have either of those and your really going to deny me a place to provide for me and my son. I will take the courses when school is in I’m not trying to get out of them. I would love to learn how to budget my money so he always has food and all my bills are paid but to no avail. So here I am today writing this because I have no idea how I’m going to get him school clothes or where we are going to live . I can’t afford any more attorneys he’s got like 9 contempt charges for not following court orders but I have no money to fight that in .court . I’ve lost everything I’ve owned my family thinks that Jace is like their friends kids that have high functioning Autism I’ve lost all my friends because I think it bothers them to see what I go thru . People talk about all the Autism Resources out there and goverment assistance and how therapy has helped their children. But those must be people that can afford extensive therapy for their child. I read 3 yrs ago that there was special needs attorneys that specialize in divorces with a disabled child is involved and I wish to god I would have know that because with my Ex being a Pharm D I believe Jace and I would be doing just fine. Yes I would still have the anxiety and stress and Adrenal Fatigue but atleast I would know we will have a place to live and just pay our bills and not have to worry about where we are going to live. If anyone knows of something I haven’t tried please let me know

      • Betsy Kantrowitz says:

        My son is 15 and has moderate autism. Many of your sons’ medical issues sound similar to my sons’. He has EOS (eosinophilic Gastrinoenteritis). He was projectile vomiting from birth through his first year and had full body rashes. Before he was diagnosed the doctors simply patted me on the head and gave him prescription re flux meds. and said rashes in babies were normal (these covered his entire body). He was breast fed until he was 14 months. His first doctor actually asked me repeatedly during one visit the exact amount of ounces of milk per day he was drinking even though I had told him I was breast feeding. He was not gaining enough weight because of the vomiting. The doctor did not seem to be able to comprehend why I could not tell him how many ounces my son was drinking of breast milk. He had me start pumping breast milk and bottle feeding him so I cold tell him the amount.

        I switched to a different pediatric doctor. When he got his first MMR shot he got a very high fever and his legs swelled up. His very aggressive behavior started immediately after the fever. Before he would cry from the pain of the re flux but otherwise seemed normal. He started head banging as soon as he recovered from the fever and his behavior was totally different- aggressive, reactive. We moved when he was about 2. At his 4 year check up I warned the doctor that my son had a very extreme reaction to his first MMR shot but the doctor ignored my request to not give him the shot. Once again he got a very high fever and his legs swelled up. When we took him to the ER they just gave him something to bring the fever down.

        My son now has moderate autism/ ADHD/Tics(tourettes)/EOS. He is fully verbal but his behavior and the verbal tics(couching,humming) have prevented him from attending typical school. He cannot take ADHD meds because the stimulants make his tics worse. The special needs schools are very lacking in academics. He used to be above average in math but now is behind. The schools always say they need to work on behavior first. So he is bored at school. He liked school when he was younger but after we moved a few times he became cynical because each school kept giving him the same work over and over. It was useless trying to fight the school systems. Even when I would show them that they had given him the same simplistic work sheets repeatedly over the months that he had learned how to do in years past.

        We moved to Illinois a little over 2 years ago. For the first time I faced a public special needs school that does not even give grades or report cards. I complained repeatedly about getting no feed back. Their response was that this was how the special needs schools in our district work. They asked for me to give samples of report cards and feed back given by previous schools he had attended so that they could figure out how to do the same for future students! What public school does not know how to do grades and report cards! He has become cynical and over the last year has refused to do any of the simplistic work given to him. He is starting his freshman year at a typical high school next fall- as advised by his special needs middle school. During his last IEP and transition for high school they said and wrote in his IEP that he was working at a typical 8th grade level. (my daughters 5th grade gifted math teacher sent home a pre algebra final exam for her students to try over the summer if they wanted to. I gave it to both my children. My daughter who will be starting 6th grade got a 97% while my son who is about to start high school and whose special needs school said he was on an 8th grade level got a 63% and did not recognize a quarter of the problems on the test) They are sending him to the regular high school even though he has always been in special needs schools and in classes of less than 6 students. During his ESY at the high school this summer they said they could not figure out what his academic abilities were. What do you expect when the middle school gave no grades/report cards. He also had no incentive because he was getting no feedback.
        For better or worse in elementary school in Pennsylvania he did lots of head banging in school so they saw first hand where his injuries were coming from. When we moved to the suburbs of Las Vegas when he started fourth grade he was coming home from school with clear finger bruises on his arms. The last straw was when he came home one day with his back covered by a rug burn and a large bruise. He said he was scared in class and tried hiding under a chair and the teacher dragged him out from under the chair. We took pictures of the marks called the police and contacted the school. The teacher was fired and lost her teaching license.
        Dan has wanted to have friends but because he went to special schools the local kids always had their own clicks from typical school and did not want to have anything to do with the odd kid. I was also isolated. I was bullied k-12 because of a speech impediment but I feel awful that my son’s experiences are far worse than mine ever were. I went to regular school, college.
        I have been medically diagnosed with PTSD. Not just because of the extreme situations with my son but other things that I have gone through. But even with the diagnosis from professionals I am not sure that I qualify compared to people who have been through much worse.

    • JJ says:

      This one really caught my eye
      Not sure who you are or your experience with autism, but your insensitivity is outrageous
      My daughter destroyed many things including property(house burning)beloved items and not to mention a marriage and entire family. At age 22 she is now doing as well as anyone on her level could possibly do, living in a group home bc she requires 24/7 care. Me? Not so well
      PTSD is real and sadness from losing my daughter and not being able to do anything about it is brutal
      Hope you get the message here

    • JJ says:

      Autistic Helper needs to walk in some of our shoes
      What a judgmental awful person

  11. AutisticHelper says:

    You claim vague symptomatology,where you feel you are searching for ‘danger’. But there is no burden of a specific traumatic event, which would be intertwined with this search for danger to make more specific fears. You seem talk of a horror of the future and things that are different, as opposed to the past.

    You tell you dislike danger, but you do not say how anxious it makes you feel.

    You would not have tangential hypervigilance for danger, people with Ptsd know what reality is. They know they only feel danger is forthcoming. Looking for and imagining new traumatic events is not Ptsd. It is the event which actually happened in the past which takes over their life. They don’t suddenly think the world is dangerous.They can see, smell, hear or taste anything and then zoom, they’re back in the past hallucinating the event again. It’s reminders of the event that keep them anxious, and then searching for danger. It’s never the searching for danger that never happened which causes the anxiety and flashbacks.

  12. AutisticHelper says:

    Listen here.

    You do not have Ptsd.

    You are not diagnosed.

    You have not been abused.

    You have not been endangered.

    You say your ordinary worries are hypervigilance, but you talk about no other symptoms. Ptsd has hypervigilance, along with avoidance and reexperiencing.

    You blame your disorder on your child.

    You speak of no flashbacks, dissociation,avoidance, hyperarousal /sensory overload, nightmares, depersonalization, derealisation, intrusive thoughts, numbness, detachment,rumination, lost hope, nope, nothing.

    • ProfessorTMR says:

      You seem to have a very personal aversion to understanding how someone can get PTSD. Diagnosis does not make PTSD, trauma does. There are many, many undiagnosed cases of PTSD in the world. One does not need to be endangered to have PTSD, you merely have to have a loved one who is. When one lives with a child who is CONSTANTLY in danger, and/or a child whose previous life was dramatically changed due to a vaccine reaction (as is the case for many children with autism), that can definitely be “trauma,” and that doesn’t change just because you don’t like it.

      Hypervigilance IS hyperarousal and sensory overload. And if you think parents under this kind of stress are NOT have flashbacks, dissociation and avoidance symptoms as well as nightmares and intrusive thoughts, you are deluding yourself. In addition, “lost hope” is a hallmark of many, many of them, and it is institutionally promoted as many healthcare providers start with the list of “your child will never’s” when giving a diagnosis.

  13. Zenen says:

    Hi 🙂
    I have Aspergers [132 iq], Anxiety Disorder, ADHD, PTSD and severe Depression. My son has a diagnose of ‘general Autism’ because they haven’t figured out his ‘label’ but he’s just like me, but so much more violent and crying or screaming. He’s started cursing because of another kid and uses it against me. I had PTDS before but was doing better until my bad ex and then my kid mirroring this, not talking or hurting himself for attention at 3 years old. I think the home experience back then has had an effect on him too. My shrink told me after EMDR that she’s seen my symptoms and problems in multiple people with the same diagnose and trauma’s in their past, and their kid being different.
    Don’t get me wrong, he has moments. Other moments he’s brilliant and amazing and I am so proud of him, with his own problems. But I have trouble not having a sensory overload when he has an all out autistic fit and does the scream, punch, hurt himself combo. I end up having full attacks in the middle of the night when he is asleep.
    Thanks for this perspective, and the understanding Well written. Thank you.

  14. Kimberly Moxley says:

    Thank You !!!! Yes Yes Yes and Yes! My youngest son is Dx Autism Aspergers, ADHD, Sever anxiety, Major Depressive Disorder, PTSD, And OSA. While our struggle at home has lessened with the introduction of Intensive In Home Therapy, what he goes through (and us) on any given day within a school building is frightening to say the least. Tomorrow we have an IEP meeting to discuss new findings and revamp his IEP. Of course they say “Hes just lazy and manipulative” Ive heard it all. I was one of the lucky ones. I began researching my sons symptoms and behaviour bfore he started school and recived a Dx when he was 5. Since then every year is a fight witht he schools to get them to undrstand my son and stop damaging him. We now have the backing of his therapist and his psychiatrist in that his stressors and anxiety inducers are SCHOOL ENVIRONMENT RELATED ONLY. Meaning we arent haveing issues at home. We give consequences and we do indeed contrary to th schools beliefs…discipline our child. Thank YOu Thank You Thank You for writing this article and I deffinatelyw ill be saving this on my laptop. Lookig forward to more!

  15. Itiswhatitis says:

    Thanks for this. Both my sons have autism and my oldest is nonverbal with downs and epilepsy as well. Had to pull him out of school due to a rage filled episode on the school bus-thankfully there were no other children on there. To add insult to injury I had to pull my other son out of school due to behavior problems and put him in online school. We’ve had to get rid of most of our living room and dining room furniture. My older son has broken tvs, tables and multiple other things. Went to a couple different places for useless psychiatric help. The one place in the state I could put him in for treatment refuses to take him unless the situation gets dire in which case it would be too late . He’s been in treatment a few years ago(which I had to pull teeth for practically) and was on a helpful medicine but it made his blood pressure dip so low I was forced to reduce the dose. Any drug other than that makes him even more hyper and ragey. I feel so helpless but still I trudge on. My husband is having to retire early to help me manage my son. I am so exhausted and I miss having a life. Can’t take my son anywhere anymore and there’s no where he can go so we can get relief. It’s no damn wonder we are so depressed. Anyone would be.

  16. MC says:

    Without pointing fingers at the kids (I was an autistic kid; very mild but looking back I realize very clearly that raising me was no picnic for sure), the fact is that ALL involved parents of special-needs kids are at risk for PTSD.

    First there’s the constant vigilance over the kids’ needs, safety, and behavior. Constant vigilance isn’t a natural state for anyone. It wears on your nerves. And you get ZERO EMPATHY. If you tell people you’re tired, they tell you to stop being constantly vigilant. If you stop being constantly vigilant, you get berated and blamed for whatever your kids do when you allow yourself that breath. At the end of the tirade, they tell you to watch your kids better. HA!!!

    Then there’s the constant battering you take. No matter what you do to/with/for your kid, someone is going to tell you that you’re doing it wrong and will damage them/should have gotten results by now/are the Antichrist. We remind the parents of TYPICAL kids that nobody gets every aspect of parenting perfect all the time and to be kind to yourself and just love them. Most folks wouldn’t DREAM of cutting the parent of a special-needs kid the same slack (and most of the parents of special-needs kids wouldn’t dream of cutting it to themselves– and can you imagine the fur that would fly if you did?!).

    And then, as others have noted, the complete and total lack of graduated and specific support. Not only are you dropped into a minefield with a “Joey has XXXXX, visit this website, have a nice life.” You are on your own. There are other people wandering the minefield, and sometimes you can share war stories and tell each other that “There are mines over there.” But ALL OF YOU ARE ON YOUR OWN.

    If you described this way of living without attaching the term “special-needs child,” people would be horrified.

    And most of it doesn’t even come from our kids. It comes from the callousness and judgment of (ex)friends, family, and a society that in general just doesn’t give a damn.

    Nope, no clue why parenting a special-needs child would give you PTSD. None at all.

    • ProfessorTMR says:

      Excellent analysis, MC. We are seeing this kind of stress in so many parents today for these very reasons. Thanks for commenting!

      • Mom of Aspie says:

        This is me right now. My son is 26 and all his anger,rage, and aggression have been on me for so so so many years. Being treated for severe depression and anxiety , hospitalized once, cutting and I am 50 years old. I don’t want to die, but I do not want to live in this state mind. I want to live and be happy. I live in the Chicago area, does anyone know where I can go where people are familiar with this ?

    • Monica Wright says:

      Wow. God bless you. You put it so succinctly.

    • Trisha says:

      Wow, very well said. I couldn’t have expressed it better!!

    • Nancy says:

      I completely agree!

  17. Noreen says:

    I need to add that she moved out at age 24.

  18. Noreen says:

    Those who deny link of mercury to autism whether via vaccinations or direct handling of mercury (I was a dental assistant handling mercury while preparing amalgum fillings multiple times each day, and while pregnant with my child who was pronounced autistic at age two.) Back in the day, we did not wear gloves while working chairside. I never connected that mercury exposure until a few years ago.

    I was widowed just when I turned 23 and my kids turned two and three shortly after. My family never helped me in any way and I raised my girls on my own. I remarried briefly but he was abusive to my children one time and I told him to hit the road, Jack! Relationships always took a backseat to my kids and I have been single most of my life. My autistic daughter moved out (I HAD TO LET HER). She. expected me to support her but I could not and take care of myself, too. We have no contact, her choice. My other daughter who would have been a comfort to me died in a motor vehicle accident at age 17. So, it is as if I never had kids and am alone as an older person. I know I did the right thing in helping my autistic daughter but she blames me for placing her in a treatment center residential school when she was four because she was not functioning very well. It was $1000.00 per month and I used $12,000 of the small insurance money from her father’s death to pay tuition plus soc sec for meds and clothes and got a job as well. All is not well that ends. I am suffering today from all that stress and it has changed my personality because of having to do battle on my child’s behalf for so many years. Thanks for the article, Cupcake. Please excuse any typos.

    • Bj R says:

      You did the best you could! And what was right for your children. Bless your heart.

    • Melody says:

      Hello Noreen, could you please reply back and let me know where it was that you put your daughter? I have a son that sounds just like your daughter was. But my son is now 11 yrs old and is in public school and they have him registered as a 6 th grader. And he should be with the pre- school children. He’s in a confined classroom with 2nd thru 6th grade and they are different but they know what’s going on and can read and write and my son sits in the corner and scribbles on paper . At least you did something for her and I’m sure she’s doing a lot more than she ever could have staying at home with you. I feel like I’m taking and wasting these important years in my sons life when he still is young enough to comprehend and can learn a lot more than sitting in a corner of a classroom I don’t want people judging me but they don’t know what I go thru being a single mom with no help at all and when he gets violent it scares me. I know I would feel better knowing he’s getting the correct therapy and schooling so that we can have a better relationship when he gets out. And I could possibly get my health back on track. I feel like a bad mother sending him to what is suppose to be school but is really daycare. If you get this my email is [email protected] God bless you and I believe you will have a relationship with your daughter.

  19. Sheogorath says:

    […] only to have a doctor give a side glance and an autism diagnosis in less than 15 minutes time […]
    You’re clearly not speaking from personal experience. I remember my own assessment, which took 24 hours spread out over several weeks from when I was two to when I was three to complete. I didn’t learn until years later that I’m Autistic, but instantly remembered the place where the assessment took place when my parents told me the age I was diagnosed by a behavioural psychologist.

    • ProfessorTMR says:

      Your experience is not necessarily the same as anyone else’s. I have heard a shocking variety of experiences involving autism diagnoses. You are clearly high-functioning. Autism is far more obvious (and thus autism diagnosis far more straightforward) when it is severe.

  20. Imelda Cesear says:

    Parents of autistic children do not have PTSD, they have CPTSD (complex post traumatic stress disorder)….there is nothing “POST” about having an autistic child who has severe behavioral or health care issues that our fine medical establishment still can’t help and our ERs and hospitals are woefully unprepared to deal with. It’s not the autistic person’s fault, by the way, the parents have CPTSD, it’s the lack of support from our government and medical, educational and psychological support systems that can drive parents into a state of constant crisis constantly fighting for what their autistic children so desperately need.

    • ProfessorTMR says:

      CPTSD is a subtype of PTSD, so calling it PTSD is not out of line. However, you make an excellent point about the ongoing nature of the trauma. This is one reason why it’s very important for parents to take care of themselves to the best of their ability. Unfortunately, they get little help in doing so.

      • mimi02642 says:

        It is correct that “post” needs to be removed and it needs to be called chronic traumatic stress. Highly sensitive children are more impacted by stress, so what might be chronic stress for a typical child will be “traumatic stress” for a HSC. That is why schools and families need to stop using authoritarian “discipline” that is actually methods of fear and intimidation like that used for obedience training for dogs and circus animals. Instead, parents and teachers need to use positive role modeling, and treat the children with respect. Parents and teachers need to learn the skills to validate children. Unfortunately, adults with unrecognized PTSD behave like “adult children” since they are functioning with avoidance, denial, and dissociation. When PTSD is not treated in childhood, the adults often become PTSD/Dissociative Disorder in adulthood. We are now seeing this as a common disorder in high levels of the corporate world and government. Dr Jekell Mr Hyde describes this disorder, which accounts for the corruption and lack of morals we see in this split functioning. Dr Jekell is the “parent” (Superego), and Mr Hyde is the child (Id). It is an example of codependent personality and loss of identity (ego). It does not allow holistic adult functioning with a strong sense of self or identity, but codependency. Codependency and addictive personalities are now pervasive in our society but difficult to recognize since they “look good” to outsiders, since the dysfunction is hidden. This is the reason it is said that by the year 2020 everyone in the US will be psychologically unable to object to the New World Order of government that is taking away our freedom via the school system (Common Core), government, and corporate management. When we are in a codependent system, we fear and distrust the authority that we are dependent on, but we are conditioned to become submissive and obedient to that abusive authority. The US has become a PTSD nation.

    • Marzi says:

      Well said!!!!

  21. Kathy says:

    My mother in law just recently accused me of abusing my son, because I spanked him. I don’t agree with what I did but I didn’t abuse him. He is severely autistic (age 10) and attacked his 3 year old brother. I snapped. Day in and day out. I didn’t hurt my son, I just spancked him and gave him a time out in his room. I was angry and I was crying at the same time. My son hits himself all the time and my MIL told me that is was my fault he hits himself. I don’t abuse my son. I love him….but I feel like I am in a war zone. He is non-stop. He circles me and waits for me to turn my back and then he attacks me. How is this my fault? All of the times that he has it me, I never once raised a hand to him. It is just so hard watching him hit the little one. Today I was helping my 3 year old get dressed and he raised his arm up to scratch his head and I flinched and covered my face. I started crying. I am so nervous ALL the time and in my own home. My husband works two jobs because one of us has to be home. How is this my fault? I never abused my son. I feel like I am hiding in the bushes, waiting to get shot…everyday..every moment. This article made me cry because I realize that I am not alone.

    • Katie says:

      Kathy, I am so very sorry you are going through this. Only diet and some things like that helped my sister (now adult) who used to be EXTREMELY violent. Please feel free to write to me at [email protected]. Praying for your son’s healing.

    • mimi02642 says:

      It is abusive to spank a child since it is a form of physical violence that gives the wrong message. That kind of treatment causes a child to associate pain with love. What you have described sounds like the dynamics that are typical of PTSD families. When children have neurological sensitivity, it is often the result of a mother with the same neurological sensitivity and the adult anxiety disorder that goes with a childhood of traumatic stress from parents who also had anxiety/PTSD. It would be good to educate yourself about codependent family systems and traumatic stress in childhood. Learn skills to validate children emotionally rather than using reward/punishment, which is Behaviorism. It is not recommended to use Behaviorism or authoritarianism of reward/punishment since those are the methods of “obedience training” for dogs and circus animals, not children. Positive behavior modeling is what works for children, and allows them to have respect and validation, rather than fear and intimidation. It’s important that a mother manage her own anxiety and “reactive” behavior in order to use positive behavior modeling with her children.

      • RM says:

        Give me a break. I think most of us at one time or another spank our kids. We are human beings, and we get stressed, lose patience. Spanking your child once in a blue moon if their behavior is truly dangerous does not make you an abusive parent.

      • ProfessorTMR says:

        Just because “most” people do something (and it isn’t most everywhere, spanking is illegal in Sweden), doesn’t make it right. And spanking a child “once in a blue moon” may not make you “an abusive parent,” but that doesn’t mean that it is not abuse — or even just a bad idea.

        “When we promulgate the notion that our success is directly measurable to the violence visited on our bodies as children, we reinforce a societal supposition that pain is an instrument of love, and establish a false binary between the streets and the strap.

        I take Peterson at his word that he loves his son, but the drawing of blood isn’t an expression of love. Love doesn’t look like that. That looks like an expression of anger and exasperation that morphs into abuse.”

        “‘Use of corporal punishment is linked to negative outcomes for children (e.g., delinquency, antisocial behavior, psychological problems, and alcohol and drug abuse), and may be indicative of ineffective parenting. Research also finds that the number of problem behaviors observed in adolescence is related to the amount of spanking a child receives. The greater the age of the child, the stronger the relationship.

        “’Positive child outcomes are more likely when parents refrain from using spanking and other physical punishment, and instead discipline their children through communication that is firm, reasoned and nurturing. Studies find this type of discipline can foster positive psychological outcomes, such as high self-esteem and cooperation with others, as well as improved achievement in school.'”

    • kathy i have a child like yours that suffers from autism his 8 and hits him self also. but i notist its the chemical of the immunizations. does your son craves sugar? allot try not to let him close to sugars and his going to be more calm. and i know its not easy.. good luck!

  22. Bre says:

    I’ve read a great deal into the recovery of symptoms. I have also read a lot of stories of those who recovered from symptoms, stating that their social behaviours have become more ‘acceptable’ but that they still struggle with many internal symptoms. I can’t say I understand the extreme end of the scale, I have a daughter with Autism and she does many different therapies, she has matured and to us she’s who she is and she is a great deal of fun. I’ve really never worried about or had to think of recovery, I would like her to have her independence to some degree when she’s older (I think she’ll always need some guidance) but losing the diagnosis completely is new to me.

  23. Bre says:

    I’m sorry…are there a couple comments there where people say their children have recovered from Autism!?!? Ermmm…

    • ProfessorTMR says:

      Yep. Despite what you’ve been told, it happens. A recent mainstream study, referred to by no less than Thomas Insel, Director of the Interagency Autism Coordinating Committee and as mainstream as you can get, found that approximately 9% of the children in the study lost their autism diagnosis by adulthood ( This was surprising news to Insel and most other mainstream “experts.” It was not, however, surprising to us, as each and every one of us knows multiple people who have lost their autism diagnoses, and we’ve been talking about how they did so for years.

      • Marzi says:

        Recovering from a “diagnosis” because one no longer exhibits certain behaviors is a DSM issue (as in what can be billed for and does one meet some arbitrary threshhold ) it is not the same as no longer being autistic,,,it is about learning the skills to appear more neuro-typical. It does not necessarily say anything about what the person experiences inside. We all can learn socialization skills to one degree or another- how to behave, how to not appear to weird… how not to stim, bite our nails, bang our heads, etc…that doesn’t mean that someone is no longer autistic. I am 56 and have a son who until he was 12 was given the diagnosis “rule out autism” he the was given the diagnosis of PDD-nos – that was because 17 different diagnoses/disorders in one person didn’t make much sense so they decided on PDD-nos with alot of sub diagnoses. Now PDD-nos, Aspergers, etc no longer exist in the DSM. They have pulled language delay out of the autism spectrum diagnosis, if that is the primary feature of the diagnosis,and made it a separate diagnosis, (except for social/pragmatic/reciprocal language difficulties), and now we have have Autism Spectrum Disorders, high need. moderate need, low need. If we had people and systems that actually understood autism as not being about whether or not someone is verbal that makes them “high or low functioning” or high or low need, but that it is a different way in which the brain processes input and output, sensation and social learning, lamguage and interaction, among other things. I remember saying to the principle when my son was in Kindergarten, before he was diagnosed…”some kids have difficultly learning math and some kids have difficulty learning socially acceptable behavior, they are both skill deficits/learning disabilities and may require different methods of teaching those skills whether math or social behavior, than those required to teach more typical/average kids. ” I am 56 and during my childhood, gifted education was the thing being studied rather than special education. Much special education theory came out of the gifted education theories and studies of the 1970’s. In fact as I get older and from what I have learned about my son (who is not particularly academically gifted) is that if they had the diagnosis back when I was a kid, i probably am autistic as well as “gifted”. I sturggled terribly, and still do with understanding social cues, I was always a misfit and uncomfortable in my own skin, I have all kinds of sensory issues, and had/have slightly aspie language characteristics. I was one of those “too sensitive” kids, i was teased, I was rule based and hyperethical and still am, I was an outcast and teased a lot, I was painfully shy, and was a selective mute, I just didn’t fit and I still don’t. But, because of my other skills (perhaps my intellectual giftedness) and because of the difficult circumstances of my childhood, I had to learn how to “fake it” to survive. So I studied and mimicked as best I could what I thought was expected of me, and found unconventional ways to fit in…..and despite being extremely anxious in social situations and still lousy at small talk and often depressed by my being who I was, i am still who I was then and until recently I could pass pretty well as neurotypical….but as the single parent of a 25 year old young man with autism and severe explosive behaviors, and an 18 year old daughter who is perhaps more like me (all of us diagnoses with ADHD and anxiety) and now my being diagnosed with PTSD and depression after years of fighting the system, I dont pass as well as I used to. It is exhausting to have to figure out every little nuance and appear “normal” and function in a world that feels to me like I fell down the rabbit hole. Before my son, I could retreat and recharge when I needed to, but for the last 25 years the system, not my son, has created such trauma and feeling of being unsafe and of being unable to keep my son safe, that there really never is any rest. So does one “recover” from autism or just learn how to manage it to appear less autistic to others?

      • ProfessorTMR says:

        I understand your perspective, but Raun Kaufman, who runs the Autism Treatment Center of America and was himself severely autistic as a child and recovered defines recovery this way:

        “I consider someone fully recovered when they are not only free of outward symptoms but they are recovered on the inside too,” said Raun. “They don’t have to work extra hard in social situations and they are not secretly holding themselves back from repetitive behaviors.”

        So, yes, true recovery to the point where someone no longer has autism can and does happen.

    • Kerry Sellers says:

      Yes, MANY families have been able to recover their children from the SYMPTOMS known as autism. My son is on that road right now, and although we aren’t there yet, he makes progress constantly. 🙂

  24. maria says:

    What about the connection with lyme disease??? I have an autistic son and ive just been diagnosed with lyme disease, just as i suspected. I also have arthritis… also connected with lyme disease. I have another son with ADHD, a daughter with lyme disease, and a daughter with rheumatoid arthritis and epilepsy. I am 100% sure my sons autism was caused by lyme disease. Also all our health ptoblems. I already ruled out vaccines.

  25. Kerry Sellers says:

    You are spot on cupcake!! Thank you for writing this! Now, what to do about it!? I use eo’s from YL, but I am finding that isn’t enough 🙁

  26. Kerry Sellers says:

    I have learned that the people who believe that vaccines do NOT cause autism, HAVEN’T done the research! For example, Ginger Taylor has complied more than 86 studies that have shown vaccines can and do cause autism. There’s also the CDC Whistleblower, and IT’S ON THE VACCINE INSERT, THAT VACCINES CAN CAUSE AUTISM. Enough said. 🙂

  27. mh says:

    WOW Cupcake, you are so spot on. We live a daily life of challenge-a medical system that ignores this biomedical injury and refuses to treat it, an educational system that seems only interested in paperwork requirements and refuses to implement the IEP, a social system that has not heard the urgent pleas of parents and remains focused on their own agenda, a court system that has no clue…… Even the organizations that allege to help such as Generation Rescue, ARI etc as well as local groups go into the woodwork when folks need real hands on assistance in dealing with all of the above entities. The bullying and abuse our children endure descends upon us as we advocate for our children; each of us reinventing the wheel, so to speak, as we travel life with our children. We can be and have been branded abusers as we seek care and nurturing for our children. The emotional toll is reflected in fractured family life pitting parent against parent, siblings against each other and against parent and as you say, friends and extended family who retreat into a more comfortable world. The ongoing moral war is as real as any with guns and mortars. M

  28. David's Daddy says:

    my brother and his wife watched David over the holidays. They got a taste of the PTSD by the end of the day. They couldn’t understand why they were so tired. Adrenal fatigue and autism go hand in hand.

  29. Alec Caso MD says:

    As long as we are clear that autism does not come from vaccines, I will agree that there are similar levels of stress among mothers who raise children with developmental issues.

    • ProfessorTMR says:

      Well, we’re glad you acknowledge that some of what parents are saying is true, but I always find it fascinating that people will listen to parents on a whole range of topics, but deny that they could have any credibility on the subject of the role vaccines have played in their children’s illness. I knew a science journalist who showed me her series of articles on autism and vaccines. One of her articles was about the fantastic research being done (into seizures, gastrointestinal involvement, and mitochondria I think was the third one) on autism and its related conditions, that would never have been done if researchers “were focused on vaccines,” never noting the irony that those research topics came from the very same parents who were adamant about a vaccine link (often directly causing those seizures, by the way).

      So, yeah, YOU may be “clear” that “autism does not come from vaccines,” but people who are paying attention are anything but.

      • B Kantrow says:

        My son has had gastrointestinal problems from birth -projectile vomiting, multiple food allergies etc.) but he was a calm, loving baby. When he got his MMR/DTP shot at 18 month he immediately got a high fever and severe swelling in his legs.. After the fever he was like a totally different child. He started head banging and other self abuse and became violent. He never recovered. When he was 4 he had a different doctor. I told the doctor of my son’s previous reaction but he insisted on giving him the MMR/DTP even though I asked him not to. I was busy trying to calm my son’s tantrum because I had told him he was not getting shots that day because I did not think he was due. The doctor gave him the shot. My son that night got a high fever like the first time with his legs swelling and we took him to the ER. The ER told us there was nothing we could do and he would just have to get over his fever. Yet when I tell people that my son had an immediate reaction and permanent change of behavior after the shots I am treated as if I am clueless. I told his current doctor about what happened and he insists it must have been the DTP part of the shot (despite him having been given boosters of DTP in the past without a reaction) because he says studies prove there is not a connection to MMR and autism. He says he will no longer give him the DTP shot and put it in his record for him not to get it. It is like talking to a wall. I saw my son change and become violent and immediately have autistic behaviors after the MMR but no doctor will believe me even though he ended up at the ER. Now I have to live with the daily stress of a behavioral autistic child and the guilt that we would not be going through this if he had not had the shots. My adopted daughter had no problems with the shots. There must be some genetic component to some kids being sensitive to the shot or it could be because his immune system was already weak because of his digestive problems.

      • ProfessorTMR says:

        There is DEFINITELY a correlation to the digestive problems. It seems that one of the most common “genetic” issues is MTHFR mutations that make it difficult for children to detoxify. If they have one or more mutation in combination with gastrointestinal issues, the gun is preloaded for any environmental insult to do some serious damage and vaccines, including MMR are some of the most efficient. I’m so sorry to read your story. It’s so similar to those I read every day.

    • Stephanie Miller says:

      We are NOT clear on that one!!! Vaccines do cause autism. I have 4 daughters – the older 2 vaccinated and diagnosed with autism (the oldest is recovered), the younger 2 unvaccinated and labeled gifted. Same mother; father; pre-natal care; route of birth (all C-sections); same house; same everything!!! The only difference is vaccination!!!!!

    • Stephanie Miller says:

      We are NOT clear on that one!!! Vaccines do cause autism. I have 4 daughters – the older 2 vaccinated and diagnosed with autism (the oldest is recovered), the younger 2 unvaccinated and labeled gifted. Same mother; father; pre-natal care; route of birth (all C-sections); same house; same everything!!! The only difference is vaccination!!!!!

  30. Deborah says:

    My son after tours during Iraq War suffers from PTSD. Nothing has worked for him to help with PTSD symtoms but Transendental meditation:
    Recently he started using Young Living Essential oils, Peace and Calming and Valor.
    Both have made a significant difference of him going through his day focused and alert, calm and sometimes even joyful.
    It has made me his mom so grateful to see him able to enjoy life again.
    I became involved with Young Living Essential oils fifteen years ago. The company is the oldest Essential oils company, 100% pure Organic and grownand distilled on their own soil which they use no pesticides or fillers. They stand behind their product from seed to seal. This was very important to me as there are so many other essential oil companies out there, I wanted to make sure what I put on and in my body are pure and Organic.
    If anyone is interested in purchasing Young Living Essential oils you can use this link to purchase
    Or feel free to contact me directly [email protected]

    • Lynne says:

      Shame on you for using this forum to promote your multi-level marketing business.

      IF you really wanted to help, just share which (not brand) oils you used.

      • ProfessorTMR says:

        There is nothing inherently shameful in promoting a business you believe in. That said, we don’t post comments that amount to nothing more than a commercial, especially if it’s a commercial for something we don’t know. TMR is very familiar with essential oils in general, and Young Living oils in particular. The oils she mentions, Peace and Calming and Valor, are combinations specific to Young Living. Other brands may have comparable versions, but she would not necessarily know that. Essential oils are a treatment modality that many would not have considered for PTSD, so the comment above was approved.

  31. Mumzee1961 says:

    All of us moms – whether our child is diagnosed with Autism as a toddler, our school-age child is being treated for ADHD, our teen is found to be using drugs to self-medicate her anxiety/depression, or the countless other major things that happen daily in our homes across the country – should open our hearts and our minds and support each other. Unfortunately we usually don’t do that until something happens to our own child. BUT…the article and the study this refers to does NOT say parents of children with autism have PTSD! It says they daily live with the same levels of stress as combat soldiers. PTSD is very different and to say that you have it because you deal with daily levels of high stress is INCORRECT. PTSD occurs when a person experiences trauma where their life is threatened to the point that they believe they may DIE at any moment – from being in combat, or at a public shooting incident, being raped, surviving a plane crash and other similar traumatic experiences. Their brain changes its connections from previously being able to problem-solve a stressful/difficult situation to now their brain going straight to “I’m going to die.” All the physical and mental (horrible) trauma is relived over and over again. I know this because I was finally diagnosed a couple of years ago because of trauma in my teens – I’m now in my 50’s. Having daily crises with children – whether autistic, cancer-stricken, drug-addicted, or the myriad of other overwhelming conditions – all need support and understanding from friends, family, community. The similarity between people with PTSD and parents who deal with these issues is that when it goes unrecognized, misunderstood, ignored or downplayed it only gets worse. [Combat-stress and PTSD are different issues.]

    • ProfessorTMR says:

      Yes, combat stress and PTSD are different issues, but they are highly related and correlated. Many soldiers who experience combat stress later experience PTSD. PTSD does not ONLY occur from stresses where you believe YOU will die at any moment. It is frequently induced in people who watch others die or believe that others’ lives are in danger. What you don’t seem to know is that MANY parents of children with autism or related conditions have been in that very situation, many of them multiple times. Many children develop autism after a life-threatening vaccine reaction. In addition, many suffer violent seizures that land them in the emergency room repeatedly. In addition, many are prone to “wandering,” though “bolting” may be far more accurate. Many, many parents of children with autism have spent horrible, nerve-wracking hours wondering if they will ever see their child alive again. While this may not induce PTSD in some people, it very definitely will in others. People do not all react to the same stresses in the same ways.

      • Laura says:

        Thank you Professor. I have a husband who served in both Iraq wars, 4 tours total, and a son with Awesomeness. I feel beat up, I work three jobs, I love my husband, my son, and I do everything so my sweet 16 year old daughter can see the world as a kid. I do my best, just to wake up everyday feeling like a complete failure. I will be 43 on the 19th of December, and because of this life, my body is paying the price. I wake up thankful I have another day with them, just to be brought to tears, knowing both physically and mentially, I’m not well. A friend of mine, that used to work with me, that lived a hard life, past away suddenly. By suddenly I mean I saw her pick up her paycheck at 9:14 am, and she died less then three hours later. I don’t want that to be me, but other then winning the lottery, I can see it happening. I now wake up with this fear, if I get two seconds to myself, it just comes out of nowhere to consume me. They say worrying doesn’t help anything, I’m just trying to get the hurt, fear, feeling like a total failure to stop. I just want peace. Thank you for listening

    • PTSD can be caused by ANY traumatic event or event perceived as traumatic to the individual. Adrenaline repose in the body is the same –whether there is a gun in your face, or you watch someone get killed, or you autistic child wakes you up cold from a deep sleep by screaming. And when those episodes occur daily… Honestly… I rather take a gun in the face once a year.
      –As someone who is living a nightmare with autism AND past PTSD experiences outside of the realm of “autism”, I can tell you there is no difference. I can tell you I dealt with allllll the other crap rather well until autism. The daily rages, screaming, fighting, punching, fight/flight crap is what pushed me to the point of non-functioning human being. Autism.
      And I’ve been through and seen some wicked shit.
      Autism. PTSD is PTSD. No matter what the cause.

  32. Rosalyn Carter says:

    I agree and empathize with all of you wonderful mothers. Thank You! Thank you for your honesty, strength, perseverance, and love.

  33. Cree Mh says:

    It is such a rarity to find my experience so honestly captured. Thank you for giving a glimpse of the reality of my life and the lives of so many others. We are the majority within this population, yet the least represented, least funded, least supported. Our stories don’t end in recovery and happy ever after, so they remain untold. Again, thank you for sharing this bit of us with the world.

  34. Taximom5 says:


    I can’t tell you how much it needed to be said.

    I’m one of the lucky ones–my child recovered. And that has put me in a different autism-mom-social-community–the one full of moms who have NO CLUE what you parents in the trenches are going through The autism you deal with? It’s a totally different autism from the one they face. They think they KNOW autism. But none of us who haven’t gone through what you’ve gone through really get it, until we’ve seen it in our own eyes. What you go through is so completely overwhelming, most parents like you have absolutely no time to tell people or even write down what it is really like.

    And so the picture most people have of autism is the one that the parents who are NOT so overwhelmed paint, because they’re the ones who have time to paint it. (And the pharmaceutical industry is all too happy to advance the idea of “autism is a gift…”) So they paint happy little pictures of autism = creative child, autism = incredibly smart child, autism = child blowing up balloons, autism = happy child twirling in ballet dress, until most people get the impression that autism isn’t a bad thing, it’s certainly nothing to be cured, and hey, maybe it’s a WONDERFUL THING 🙂 No mention of the sleeplessness, elopements, drownings, feces-smearing, screaming, head-banging, self-injuring, or any of the other life and health-threatening problems that come with severe autism.

    So please, keep shouting this from the roof-tops, because too many “autism moms” still don’t get it; and if they don’t get it, the parents of neurotypical kids are certainly not going to get it.

    • ProfessorTMR says:

      It is SO good to read this comment, Taximom. All of us have had encounters with parents of kids with autism (or adults with autism themselves) who paint rosy pictures of life with autism that completely discount what life can be like for people at the severe end of the spectrum. And then they want to “speak” for autism, as if all people with autism experience it the same way. Not only is that NOT the case, most of those people would not have fit the diagnostic criteria for autism until 1994, approximately 50 years after “autism” was first described and diagnosed. As a matter of fact, the impairments that those people faced were of so much lesser intensity that there was NO diagnosis at all. So to claim that they “know autism” or “speak for autism” is to do a tremendous disservice to those are who are profoundly affected by autism. It will take more and more people like you who can say, “Those folks are right. That’s how it can be at the severe end of the spectrum, and I know because I went through it” to change the conversation.

    • 570Lesa says:

      I know I am late writing this but you are a one of a kind person and I would hug you if I could. Thanks for getting it. There is no blessing to what we go through. It’s absurd to even put the same words in a sentence with severe autism. Thank you thank you thank you!!!! And congratulations on your child’s recovery.

  35. Kerry J Sellers says:

    You totally hit a home run !! Its so true!! I’m going to print it and give it to the only family that is close. .. the in laws

  36. Susan Daley says:

    You took the words right out of my jumbled up, fear debilitated , information hoarding brain. I literally don’t know where I’d be without the support of my online Autism family. Others try to support, but nobody truly understand what it’s like to be the momma…except the other mommas. May God bless all of our children.

  37. FirefighterTink says:

    You hit the nail on the head… Constant battles and worry, I have not slept a full night in 23 years. Three years ago I suffered a Stress Induced Heart Attack and the Dr told me I had to reduce the stress in my life.. I laughed at her and asked if she met my family. I have 3 young adults with Autism.

  38. Word.

    I want to post this on my Facebook page, but I wonder if people are probably sick of 90% of my timeline being about autism, and I wouldn’t blame them.

    I have a great family that does all they can to support us, but I know I’ve been isolating lately because trying to explain our life has become exhausting. I know they think they understand, but they just don’t. And there really is much more they can do to help. I’m constantly told I need to take a break or take it easy or that I’m trying to do too much, but my mind can’t take a break. On top of that I worry about people worrying about me.

    I know our extended family love us and feel helpless too. This manifests in pity and it pisses me off. I don’t know why, but it drives me crazy. Does anyone else have this? Then I isolate more because I don’t want us to be around people when things are out of control.

  39. Melanie says:

    Another great quote I’ve lived by for years. . .
    “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow.” Radebaugh

    Know you are not alone.

  40. Pingback: Sometimes All You Can Do is Live in the Moment

  41. Yoli says:

    Apparently, being a mom of an autistic child puts you in the harsh judgment seat. Increase of abuse against autistic people is on rise. Autistic people are often targets of sick people who prey on vulnerable people. Worse, they sometimes blame parents when their autistic children is abused, as if the person with autism is less than human and somehow just being autistic is a reason you can abuse them! How screwed up is our world? Recently, a case where caregivers caught on tape punching, kicking and poking eye of severely autsitic man, we find caregivers denying all charges (though their abuse is clearly seen on camera). Their defense then takes a new twist of illogical defenses to abuse of autistics, by blaming the mom of autistic child, for being a “high maintence mom” who demands high standard of care for her autistic son, as if that justifies caregivers abusing him! Just horrific. I guess it’s open season on autistic people. See channel 8 san diego news: December 27, 2012

  42. Carmen Palacio says:

    You nailed it! I worry about the physical toll it takes on us Moms. We must find those supports and that “family”, who may not necessarily be related to us, who can and will help and allow us to get some R&R. Always working on overdrive burns out the motor eventually…

  43. Carolyn says:

    Also add the stress of the culture at large often ridiculing the things we try to heal our kids with such as diet . What mom of a diabetic kid has to fight drs or knowing patronizing teachers who want to inject her kid with sugar? We GET TREATED AS IF WE are too stupid to know what is best for our children.
    And yet even though my son had an allergic reaction to hep b shot at birth I am looked at as a wacko when I ask for vaccine exemptions even tho the shot insert clearly says not to take if prior allergic reaction.

  44. Carolyn says:

    It occurred to me that vaccine or toxin injuried brains might look like PTSD. I had mercury laden flu shot and Rhogam . Soldiers are forced to take many shots.

    Please post your source I would love to ask the researcher who found this if my hypothesis could be true. But the constant stress you spoke of is of course there always.

  45. Happy says:

    Spot on. I’ve been saying I have PTSD for a long time now. Nice to have it confirmed and to feel, once again, I’m normal in this community at least. Thanks.

  46. Laurie Murdock says:

    Spot on, Cupcake. Spot on.

  47. Momma T. says:

    What I LOOOVE about the Thinking Moms is– You ALL. Say. It. OUT. LOUD!!

    Thank you!
    Momma T. @ detourautism.blogspot.

  48. Boss mom says:

    There are even autism moms that are abusive to other autism moms. Horrible women who threaten women that don’t agree with them and it is another feeling of isolation that is heartbreaking. Bottom line is most people are good but the bad ones hurt deep down to the core

    • Itiswhatitis says:

      Yes that is the worst kind of betrayal and it happens alot. Thanks for bringing it up. Some of the ones who would seem to sympathise just pour salt on the gaping sound, the very ones who should know better.

  49. Mom says:

    Wow. That pretty much sums up how I felt for the last six years. My daughter just started full day kindergarten and I feel like a real person for the first time in 8 years (she has a sister). It took two aides to calm her down yesterday. Sympathy from me? Hell no. I’ve been doing it 24/7 by myself for SIX years. Begged for help. None. For those of you on the edge:

    “When you come to the edge of all the light you have, and must take a step into the darkness of the unknown, believe that one of two things will happen. Either there will be something solid for you to stand on or you will be taught how to fly” — Patrick Overton

    It’s been on my fridge for 6 years. Hang in there until you see the light.

  50. Kelly O says:

    I think it would surprise me more to hear of Autism parents that don’t have symptoms of PTSD at all. You can go through hell and back multiple times in a short span of time, and all while being expected to put on a brave and happy face.

    It’s times like this that I wish I lived closer so that I could give you more of the support you need. So that I could be there on my nights off and just stand guard so you can sleep soundly for those nights.

    I wish that there was more funding available to Autism families, including some funding for counseling, support groups and other resources for parents.

  51. Andie Herman, MSW says:

    Carry On Cupcake. There is much science behind your experience! No one is prepared for the challenges that come with raising a special kid. Your development as a parent has differed from those children have arrived with less complicated behaviors. My special kiddo is 26 and I am still learning about myself as a parent.

  52. Monica says:

    I can totally relate to everything you just said. It’s a lonely life and the PTSD is a real thing. I have considered taking my life many times but I just couldn’t leave my husband and children without. I’m screaming with you!

  53. Tish says:

    <3 this Cupcake! I am so there with you on this!!
    I shocked myself, yesterday… maybe something is seriously wrong with me? Depression or maybe a sign of something else that is serious?? DD (almost 5 and somewhere in the 90% for height and weight and getting to big to carry) was actually upset I did not carry her into her integrated preschool classroom and began tantruming in the hallway. I just stood there, unable to react, not caring while the teacher took the 15mins to distract and calm her. The emotional switch has turned off. I am drained. People keep telling me I'm doing great…I'm doing everything right. I should take time for myself (which I do, regularly) but it doesn't make any difference. I'm just done with being the one to calm her all the time, and all the emotion. She's got 5 therapists now, a teacher, and 2 paras, someone else can take a turn 😛 What say you moms? Are you feeling this way too?

  54. Wendy Frye says:

    I can absolutely relate, Cupcake. I too am reactive by nature now……and have been changed by Autism in my home. Great article, thanks!

  55. Kristina Blizzard says:

    Could you post a link to the study you mentioned. I am not aware of it, and wonder if you meant to refer to this study in which stress hormone levels used rather than brain scans?


  56. Charlotte says:

    Thank you for this. The part about family members withdrawing and not wanting to talk about the kids, I can totally relate. Well I relate to it all 100%.

  57. Courtney says:

    This blog post hits close to home…as since my son’s diagnosis or really even before that when he first started showing signs of something being wrong. I began to experience extreme anxiety and insomnia. No matter what I have done has helped…even modern medicine with all it’s wonders failed because how can I not constantly worry about my child, affording his supplements, treatments and therapies. Recently I found out I have developed an auto-immune disorder of the thyroid (I have been told it was kicked off by stress) and recently I was actually officially diagnosed with PTSD. I know it’s hard to understand without walking in our shoes..but I do so with others could try to understand what autism does to a family…a mother..the father and most important the child. It is life changing…it affects every aspect of your life and nothing you once knew to be true is anymore. How lucky we are to have found one another to lean on.

    • JJ says:

      I have just started reading and replying on this sight
      I hope you are alright and being just somewhat alright is probably about the best one can be raising a child with autism
      I am totally experienced in this horrible way of life for parents, siblings and of course child with this unexplainable disability
      We are victims of a crime we never knew could happen to us
      Yes… I have PTSD
      I Have a couple of good days then several bad
      I have a very long story
      Book worthy!

  58. Carolyn M says:

    For parents of school-age children with autism (unless they are very lucky, or possibly home school their child) there is also the stress of having to fight the public school system for the services and/or placement that their child needs (and that is most definitely “appropriate” for the child). For some parents, this is an almost constant battle.

    As the child gets older, there is increasing pressure due to attempting to get the child as independent as possible – before the child “ages out” of the public school system, since the services available afterward appear to be few to none.

    If you are a parent who implements biomedical interventions for your child, you also have the worry that someone will report you for “child abuse”. On that subject, if your child attends public school: NEVER tell any school personnel that you are chelating your child or have chelated your child (if you have chelated or are doing so) – it greatly increases the possibility of trouble.

    • shannon wasserman says:

      You also have to worry if you don’t do biomedical treatments. I’ve had many non-biomedical mom friends who’ve had contact with police and CPS because of loud behaviors and situations that other people just don’t understand. There’s just a lot of pressure.

  59. Lj says:

    Thank you cupcake! Can’t wait to get to my computer and share! Beautifully and truthfully stated.

  60. Diana Gonzales says:

    Yup…that’s all I got cuz you nailed it.

  61. BB says:

    Wow, reading this article is the best support I’ve had in a long time… How did you know exactly how I feel? Thanks!

  62. Mamacita says:

    Big hugs, Cupcake.

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