This weekend was a doozy, I won’t lie. I spent a long, hot, and exhausting three days at a work event that included sharing our wellness center with the local community. By the time Sunday rolled around, I was crabby and more than ready to leave. My desire to leave was only topped – slightly – by my desire to grab a smoothie; so off to the Smoothie Shack I went. As I waited for my Hawaiian Breeze to be blended, a mom and her three children got in line behind me. One of those kids was a teenage boy, about 15 maybe, with wild curly hair and thick glasses who looked suspiciously like Howard Stern. As I contemplated the possibility that his mother created a love child with the shock jock, I heard the boy becoming upset with her. The words that he spoke next stopped me in my place and caught my heart in my throat. “Stop calling me autistic!” he yelled. “I don’t want to be autistic anymore! I would be better off dead!”
The mother had clear sadness on her face and was embarrassed. She quietly responded, “I’m sorry, what do you want me to do? I can’t change this for you.” She looked completely defeated.
In that moment I had a choice to make. Do I say something to them? Do I tell them, “Hi, I’m Rainmaker from TEAM TMR, and I also happen to have this fabulous clinic where we help kids deal with the crappy parts and the yucky symptoms of autism, and we would love to help you too!”?
Hell, fucking no. I didn’t say a word. I stood there in silence until my stupid Hawaiian Breeze was done blending, grabbed my straw and got the hell out of there with tears running down my cheeks behind my sunglasses. My heart was completely broken for this child. All I wanted to do was grab him, hug him tight, and tell him that he was beautiful, precious, perfect in every single way, and that autism is a label that does not matter. It doesn’t make him less, just different. And I wanted to tell him that he is exactly who he was meant to be. But I didn’t.
I didn’t do anything at all because we can’t just walk up to children with autism and hug them tight while spewing our word vomit, no matter how lovely and heartfelt, all over them. It doesn’t work that way. They may have sensory processing issues that make them hypersensitive to touch, or they may go into fight-or-flight around strangers. The mom may have thought I was trying to kidnap Howie Jr., and for all I know she has a mean right hook! That was the moment that I became scared that autism would be the next high-risk category for teen suicides. This child just said that he would rather be dead than have autism. Let that sink in for a moment.
No matter what “they” tell you, autism numbers aren’t rising due to better diagnostics. We now have more children with autism entering the teen years than ever before. How are we going to handle that? How are we going to support them through the most hormonal time in their lives combined with the suckiest time of their lives – thanks to middle and high-school bullies, social media capturing every nuance of “difference” and then exploiting it, plus zero educational staff members who are properly trained to handle their behaviors? Our teens with autism are sitting inside the perfect storm of self-destruction, and we as a society have no clue – and no desire to learn – how to help protect these children. Scary, isn’t it?
So, while I understand that autism is not a death sentence (though many people with autism die prematurely due to “wandering” from safe places or extreme co-occuring medical issues) and there are some amazing people out there who have autism, I’m willing to wager that for every one of those people living with autism and loving it, there are hundreds of others out there who view it as a prison and wish their sentence would end. I speak for these children because more often than not they cannot speak for themselves. I fight for these children. The ones who feel different, excluded, out of control, ill, and who would rather be dead than have autism.
This is the autism that I see every day in my clinic. This is the autism that is gripping our children worldwide, on all levels of functionality, and not letting them go. This is the autism that prevents children who are kind, funny, intelligent, and loving from connecting and feeling safe in their environment. Why wouldn’t I want to help them relieve the symptoms of anxiety, ADHD, OCD, extreme sensory sensitivity, gut issues, and headaches?
When we heal the symptoms of autism, we don’t rob the child of all the wonderful nuances that make them who they are. We don’t strip them down to Stepford robots with zero personality and no more awesome quirkiness that makes them unique and gifted. We are simply healing underlying medical issues that often prevent them from shining as the beautiful stars that they are. I don’t want to “cure” my child, I want to cure his – burdens that he shouldn’t have to carry through life and that make it difficult for him to adjust and live to his fullest potential, whatever that looks like.
For those who are proud of their autism and think everyone should acknowledge how awesome it is to be autistic, please hear what we’re saying. We are not saying that you aren’t awesome and wonderful exactly as you are. We are not saying that we “hate” people with autism and wish they would go away, nor do we want to replace them with Stepford children. We are saying that each person with autism is unique and wonderful and deserves a chance to enjoy and experience their lives to the fullest. We are saying that we seek to heal the underlying medical issues in people with autism and other similar and related neurological conditions in order to help them do that.
No matter how much you may love your autism in all its manifestations, there are many who don’t. And it’s more than a little presumptuous to tell this boy and others who feel the same way that “autism is a gift” that they should be “grateful” for.
For those who want relief from their symptoms of autism, we are here to help them.
Because we love them.
~ Rainmaker
P.S. This boy’s family did come by my booth later, and we discussed how we could help them. I’m hoping we can help him find a happy ending.
For more by Rainmaker, click here.
This describes me well. I am 59 have spent my entire life wondering why I can’t do things or learn like everyone else can. Even when I think I get something figured out that I think is good it gets taken away because My body and mind just forget how to do it. Later in life I find out that I am autistic and that is the cause of all this strife. I don’t view autism as a blessing at all, in fact I hate what it has done to me and stolen my ability to live a normal life.
Thank you for this full-of-heart article, Rainmaker.
I read all the comments, and appreciated them, too.
My vaccine-injured child began regressing into autism at 13 months but turned herself around, with her own decision and will and lots of help from alternative medicine practitioners. She still has many medical issues, though, and she’s 13 — and she is a suicide risk because of her despair over her future. I have begun to think some of her medical problems are due to the unauthorized HepB she was given in newborn intensive care after her difficult birth (1.5 hours old and not even considered “stable” yet — but injected with HepB vaccine?!). CEASE therapy is next on my list of medical treatments to research.
Thanks again for the article, Rainmaker, and for your loving work with autistic kids and their families. And thanks everyone who commented, I appreciated hearing your perspectives too.
A-freaking-MEN!!! can “that group” please stop pretending that autism is a picnic? loved your post.
My teen says, “I don’t have autism. I have vaccine induced brain injury.”
I hope at home there’s love and acceptance for him and this was just a frustrated expression from a teen with “autism.” I will never forget the day my son told me life wasn’t worth living. Life not fitting in is so hard with “mild” autism. High functioning until low functioning. My son has cried in desperation and spoke words that helped me truly understand - “When I’m with kids with autism I don’t feel like I have autism. When I’m with normal people, I feel like I have autism.” I feel for the boy and his family. Without the knowledge I have today I may have just accepted autism as it is what it is like my doctors told me 10 years ago …. thank God I didn’t listen to them.
OMGoodness! i would have just cried then and there for this young man. I often worry about my son’s (5 y.o.) future. I don’t want him to hate himself. It scares me so much. As you said, I just want to lessen the burdens he faces so he can fully be his whole actualized self (whoever he will be).
P.S. I am so glad that the family actually visited your booth!
Thanks for the wise commentary. As a mother of a child with Down´s Syndrome, I have had almost 15 years to observe and reflect about how our culture regards difference. My son dances wildly for security cameras when we enter a bank or store. He escapes and runs off to have adventures. He has any variety of different responses to social situations that are not conventional. He has taught me so much! He has no boundaries;
hugging and kissing strangers, entering houses, or just violating people´s `personal space´constantly. I actually moved from Arizona to Mexico because his behaviors are not considered `wrong´or `threatening´here. People hug back, they light up, they respond with love. I have lost the impulse of constant apology. People up and down the riviera Nayarit know Max. He loves policemen, he wants to hold their guns! Here, they shake hands and hug back. They pick him up, feed him lunch and bring him home. They are amused. We are not criminalized. I do not worry he will be shot for reaching for an officer´s gun. Max has an open, non judgmental heart. He helps me see that way every day. When will we mature as a culture to see that everyone born is a part of the community, and has their special wisdom and viewpoint to bring that enriches the whole? I now question the whole school project as practiced conventionally, despite having taught many subjects in my life. There is too much sameness, a dulling routine. Children, and adults belong in the wonder, beauty and mystery of nature more. Children will learn, given security and love. You can´t stop them. What they learn and how and when should be in part their choice. Dropping expectations opens us to mystery, and real learning experiences.
I so admire what you do. I didn´t even have my child with Asperger´s diagnosed, as she was so sensitive that the last thing she needed was to be stigmatized. Also, the last thing I needed was another IEP meeting! We dealt with thing behaviorally, and eventually with diet. She´s smart enough to compensate for her lacks when they are brought to her attention. She´s different, but way cool in her own way. Her insight and compassion at 18 often amaze me.
Thanks again,
Robin
Just wanted to say I enjoyed reading your post about your son Max and your thoughts. Thanks for posting 🙂
Love this Rainmaker! My son is still the child he was when he was my “tortured soul”, screaming and banging his head all day, with an OCD kicker which nearly destroyed our family. For everyone going through this with their child, stick with the recovery road. It is worth it. I still have my amazing child. He’s just happier, more secure and so loving toward his family now, the way he couldn’t be when he was in pain. Not dealing with a child’s symptoms, is not “embracing autism”, it’s embracing a label which has nothing to do with the diagnosis and treatment of those symptoms. Labels are the false Gods of medicine. You have to look deeper to see the soul, to see the potential. We owe it to our kids to help them see it too.