There are times when I forget that not everybody sees things the same way I do. It doesn’t take long to be reminded, however. It might be when I am speaking to another parent of a child with autism, and they look at me strangely when I mention my child’s doctor is treating him for yeast. Or when I comment on an autism Facebook page, mentioning that we follow a specific diet that has helped my child to become more aware, sleep better and generally be healthier. That’s when I tend to get flamed and told I should mind my own business, and stop judging others for choosing to use drugs. And one of the most frequent comments is, “You should love your children – accept their autism, and stop trying to change them.”
What?
I do love my children, I accept their uniqueness, their struggles, their dreams and desires, their miraculous growth of body and mind.
But . . . stop trying to change them? What exactly do they mean by that?
Do they mean, “Stop doing things to try and make my children different from how they are now”? Stop giving my kids special diets and supplements, stop the therapies, stop taking them to doctors – is that what they mean? Because if it is, I’m really confused.
I live in a town that is aware of autism. There are a lot of children here that have been diagnosed as being on the spectrum. There are also a large number of adults on the spectrum – diagnosed and undiagnosed, which makes me wonder why my town would have so many people with autism compared to other towns if it’s all genetic. But maybe that’s just me.
Most of the local autism parents I know seem to be of the opinion that we shouldn’t be trying to “change” our children. Yet those same parents send their kids to school, give them speech therapy and occupational therapy, send them to Riding for the Disabled programs, teach them how to use PECS cards or use sign language. Why is that? Isn’t that “changing” their children? If their children can’t speak, shouldn’t they be “loving” those children and “accepting” them just the way they are, instead of dragging them to speech therapists? If their child can’t hold a pencil, but they truly believe their child is being the best he can be, why are they working with an occupational therapist?
One of my daughters, who doesn’t have autism, participates in a choir. Last year I dragged her along, encouraging her to learn something new, make some friends and learn some independence. She loves it now, has made quite a few friends and is seriously considering singing as a career. Yet since it was my idea, wasn’t I “trying to change her”? So according to the people in my town, and quite a few on the internet, I shouldn’t have done that.
Maybe learning a new skill is considered permissible, though – so learning to speak,or hold a pencil, or sing is fine and not considered “changing” a child. If it’s okay for a child to learn a new skill, what exactly is meant by “trying to change my child”? Maybe it’s the autism itself that I shouldn’t be changing?
At this stage I check Google – what exactly is autism? I know, it’s not as good as going straight to Hans Asperger or Leo Kanner to get the definition, but it’s all I’ve got.
Autism [ˈɔːtɪz(ə)m] noun – A mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
Hmmmm . . .
A mental condition – like depression? Or like anxiety disorder or schizophrenia? Aren’t those considered disabilities, and aren’t people are usually given drugs for them? A lot of mothers on a local autism support group give their children psychotropic drugs, like antidepressants and anti-anxiety drugs, so I guess they can’t be concerned about “changing” the mental aspects.
Difficulties in communicating – that brings me right back to speech therapy which these mothers are also doing, so that “change” must be all right in their eyes.
Difficulties in forming relationships – a local occupational therapist offers social skills classes to help children learn how to form and maintain relationships. I’ve never heard anyone complain about that. Another “change” that must be okay.
Difficulties in using language – using language is different from speech, as most autism parents know. Those of us with children who don’t know when to stop talking about train timetables, or the flight patterns of homing pigeons, certainly do. Working on appropriate use of language is also a skill that speech therapists teach to children with autism, so I can’t see any problems with that.
Which leaves me with difficulties in abstract concepts. I guess that’s a bit abstract for me – this could be referring to algebra (something my daughters all struggle with), emotional concepts such as love or sadness, or ideas that cannot be translated into the physical straight away. It seems to me that most children have difficulties with those concepts and need to learn them, and no one seems to be calling for my daughters’ school to stop teaching algebra.
As I’m a research fanatic, I look at the definition of autism as per the DSM-IV – the Diagnostic and Statistical Manual of Mental Disorders. It lists a set number of items that have to be met from the following areas:
- Impairment in social interaction domain
- Impairment in Communication
- Restricted repetitive and stereotyped patterns of behavior, interests, and activities
- Delays or abnormal functioning in at least one area of social interaction, social communication, or imaginative play
Coming back to my original question — what do they mean by “stop trying to change my child?” — I’ve ruled out the areas of communication, social communication or social interaction. That leaves me with restricted repetitive and stereotyped patterns of behaviour, interests and activities, as well as delays in imaginative play.
My son is five years old. He was diagnosed with severe autism and developmental delay before he turned three. My son likes to line things up — toy soldiers, stuffed toys, cars, people, he’s not fussy — he just likes to line them up. He also likes to watch the same DVDs – they may change over time, but usually he has two or three that he prefers to watch. Do I stop him doing that and change his repetitive play or what he watches? No, actually, because it makes him happy and helps him to self-regulate. I often use it as a reward or a way to calm him down.
One of my daughters with Asperger’s is a bird fanatic. She loves birds, she reads bird books, she has an aviary with budgies and quails, and she draws pictures of birds that she puts up all over the walls of our house. She is even a member of the state Budgie Society (where the average age is probably about 60). She talks about birds and tells us a whole heap of things we never knew about them. It’s not something I’m wanting to change; she’s got a hobby and she’s excited about it.
So I’m thinking that maybe those mothers aren’t talking to me, personally. I’m not trying to stop my children from learning how to speak, change their way of looking at the world, their interests or activities that they enjoy. I may not be giving my children psychotropic drugs, but not every autism mother I know does that either.
Now that I feel better about all of that, please excuse me while I get back to work.
You see, my son has some digestive issues that mean he has chronic diarrhoea and systemic inflammation unless I monitor his food intake. Thankfully we’ve also been able to keep his tics under control since changing his diet. I have to give him nutritional supplements to support his mitochondrial function, as well as boost his depleted nutritional levels due to his eating disorder. He’s been prescribed courses of antifungal as well as anti-parasitic medications that have made a big difference to his bowel dysbiosis. Given the results of his blood tests, there’s a possibility that he has issues with his folate receptor alpha autoantibodies; so we’re about to start a new treatment for that as well.
If “accepting” my son’s autism means ignoring his health issues, then no, I can’t do that. If accepting my son’s autism means not giving him every opportunity to live his life to the best of his ability, then I can’t accept it.
I love my son far too much to “accept” those limitations on him. I am the only voice he has right now, so it is my duty to never stop fighting for his right to be healthy, happy and fulfilled.
~ Peacemaker
Peacemaker is a mum to six children. Three of her girls have been diagnosed with Asperger’s, and one of her sons has severe autism. Their quirky family lives in Australia, where every day presents a new dietary challenge. When she’s not busy homeschooling her kids, Peacemaker can be found researching autism or reading a relaxing autism biography.
hay want to know why us people with autism have a hard time socializing in society. it’s because 99% of the rules of being social are complete and utter unneeded crap.
Certainly some of our social rules are “crap,” but it doesn’t even begin to approach 99%. And that’s not why people with autism have difficulty socializing. The reason is because they don’t know or understand the reasons the rules are there in the first place, or even refuse to bother. Many of the “rules” make it easier for people to communicate with each other and co-habitate. For instance, one rule is that you can’t just touch anyone without their consent, particularly in an area that is sexually charged. If you do not understand that, you will be trampling on someone else’s right NOT to be touched and you could get arrested and put in prison. Complicating that is the fact that consent can be implied or stated, and many people thin it’s implied when it isn’t. The safest thing to do is to get consent stated plainly. These rules are important and ignoring that will get you into trouble.
When Autistic adults say “We don’t want to change”, we’re saying it in the same sense that a cat, faced with becoming a dog would say “I don’t want to change.”
The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.
Cure = cutting out the cat’s marble eyes and forcing her to be a dog.
Acceptance = Letting her be her feline self but also teaching her how to be a pack hunter.
That’s an interesting perspective, Sia, but cure is hardly cutting out a cat’s eyes and forcing her to be a dog. The people who have recovered from autism do not report feeling less like themselves at all. If you don’t want to be cured, that’s fine, but that doesn’t mean that it’s the same for every person with autism.
“So I’m thinking that maybe those mothers aren’t talking to me, personally. I’m not trying to stop my children from learning how to speak, change their way of looking at the world, their interests or activities that they enjoy. ”
You hit the nail on the head, there. Because, believe it or not, a LOT of autism parents and professionals DO try to change a child’s interests, play style, preferences, and personal quirks. That’s what we object to when we say “don’t try to change your child.”
We object to the therapist who holds down the hands of a child who’s flapping in harmless fun, or insists that it’s “wrong” to enjoy a toy in a way it wasn’t designed for. We object to the parent who shames a teenager for still enjoying Disney movies or sleeping with stuffed animals. To the teachers who excuses the bullies because, well, your child chose to wear a “weird” outfit. To everyone who tells their kid “can’t you just try to act a little more normal?” Yes, I see all these happen. A lot.
People get confused about autism, because the term covers a lot of ground. Autism is, at its most basic, a neurological difference. It is style of brain, one which perceives, processes, and responds to the world in unique ways. An autistic person will always have those traits, no matter how well they learn to speak, socialize, etc. It’s like being an introvert or extravert– it’s innate, and it’s permanent, and it’s not a bad thing in its own right.
Autistic kids learn a lot of things slower, later, or in different ways than other kids. A lot of this is because they experience so much sensory input that it can take them much longer to sort through all the “noise” and make sense of it all. many of them also turn out to be better at certain things– math, art, attention to detail, science, spacial reasoning, music, and so on. Sometimes these strengths are in areas our society values, and sometimes not so much.
Autism can come with or without a lot of related problems– sleep issues, digestive issues, anxiety, other disabilities, and so on. No one I have EVER met (and I’m in a LOT of autism groups) has ever objected to treating those things.
But if you’re going to give your kid untested pseudo-medical treatments in the hopes that one day they will wake up and won’t have those “weird” interests or that funny laugh or unusual facial expressions that embarrass you because they aren’t “normal” or want toys that aren’t “gender-appropriate,” or if you think a therapy that teaches your child to sit quietly at the expense of them sobbing for hours afterward is worth it…
Those are the people we’re objecting to. And there are many of them out there.
Hope that cleared things up.
<3 Well said.
Great post! I couldn’t agree more. Every time I hear that I’m not accepting my child by working on his health, I can’t help but roll my eyes. Who wouldn’t want their child to have the best change in life and be healthy? I know mine will because I’ve done everything within my resource to make sure of that. Just like I did everything for my NT child, in terms of any health issues she had.
Not to mention drugging a child is not accepting them as they are. Those drugs change the brain. That’s not acceptance at all.
Keep the wonderfully refreshing view coming!
The thing that bothers me when I hear people say we shouldn’t try to change our kids is that for so many of them, they are in pain! Mental, emotional, physical pain. They act out because they can’t communicate what the problem is. The behaviors aren’t “just a part of who they are”, they’re an attempt to get relief. Before we changed our diet, my son would have tantrums that lasted over an hour. He simply wasn’t capable of regulating his behavior when he didn’t get what he wanted. After we started the GAPS diet, his tantrums stopped after a few months. He now has the ability to regulate himself that he didn’t have before. The stress in our home has decreased significantly. His health and the health of our relationship is well deserves the chance to change.
Well, I agree with most of what is said in the post, but I am in the camp of the parents who have perhaps ‘downshifted’ into a different view. I tried all of the above stuff, and guess what? None of it worked. So now I don’t really seek out the magic bullet(s). They just aren’t to be found. My son deserves REAL help from people who do real dirty work. Changing an 11year olds diaper is no fun task. I get help, and I haven’t given up hope for an improvement. Sometimes others with the frenetic zeal of constantly fighting and searching comes off condescending to those of us who have given up looking for a cure, or some magical improvement. I am very happy alternative medicine works for some, but for most of us, IT DOESN’T. Don’t call me a quitter. I hope to die AFTER my son because I know I will be the only one who is there for him in the long run.
Dave,
Thanks for commenting. You are right. Sometimes the frenetic zeal DOES come off condescending. That will probably always be the case, though. It’s human nature to be that way as can be seen in anything where there are “new converts.” Over time, many people will find that things are not as simple as they seemed in the beginning of their journey. I’m sorry that anyone would imply that you are “quitting.” Everyone’s journey is different, and not only are magic bullets are hard to come by, they are also quite personalized. That doesn’t necessarily mean that “alternative medicine” “works” only for some, but it does mean that no matter what happens, there will be a percentage that DON’T “recover.” That’s fact, and everyone needs to have compassion for the people who are facing very different situations from their own. One of the things we need to address on our blog is the creation of a special-needs trust for the very situation you are talking about. They are a necessary and important part of life for many people.
Thank you for saying what I have been trying to express but failed at doing! These therapies “change” the kids too. Besides, all people change. WE all do and can’t help doing so. I respect my daughter’s limited interests but try to expand them. I do the same thing for myself. I might find something else to like. This is what is so hard to understand.
Seriously, if Autism is not changeable, then the treatments we do will not function. If they mean “acceptance,” I have learned to accept my girl right where she is at. It is loving them as they are and seeing what will help them grow and blossom.
“You should love your children – accept their autism, and stop trying to change them.”
Anyone who says they wouldn’t take away a child’s Autism if they could is a lying. Yes you should accept the child as they are. No, you should never give up on them being able to find their talents, reaching their potential and giving them all the love and support you possibly can. Change isn’t bad, change is good!
I don’t think they are lying, Jenny, but I do think that many times the attitude is fear-based rather than love-based. Fear of how someone would “change.” But the fact is that change is a part of life, and love accepts change as much as it does lack of change. And, as a parent, your role is SUPPOSED to be making yourself redundant, which involves a whole heck of a lot of change as a child grows from being an utterly dependent baby to a competent adult. I think it’s important for all of us to look for our hidden fears and confront them in order to make better parents. Many parents who “hate” autism do so out of fear for their child’s future, but is the “hating” helping their children? I can tell you from many talks I’ve had with adults who have autism (some were severely affected as children) that they have trouble distinguishing that hatred of “autism” from hatred of the child WITH autism. If you notice the autism self-advocates are tending to call themselves “autistics” because they identify strongly with the autism.
My neck is aching from nodding throughout your entire article, yes to everything! You are an amazing mum and I send you wonderful vibes across the interwebz to continue your brilliant work. if I may be so bold, I would love to be your friend! 😉
Huge YES!!!!
Applauding your words and courage. xo
The “don’t change your child” parents often translate into “I can’t be bothered to try” or “I’m unwilling to change my unhealthy paradigms.”
Great comment to a great article! You are 100% correct! 🙂
Right on!!
Thank you! And I am sharing this !
love it! Im with ya all the way.Been at this over a decade and my son is soooo much better : )
I remember Kristina Chew often expressed in her blogs the belief that we should accept our children’s autism as a different way of being rather than trying to “cure” them. Yet she proudly described how her son used to sit in the corner and stare at rocks, but that now due to intensive educational, therapeutic, and educational intervention he was so much more involved. If she believed so strongly in accepting his autism, why didn’t she just let him sit and stare at rocks all day?
Oops, I meant to say “intensive educational, therapeutic, and behavioral intervention”.
This is a great post. I am neurotypical, and a classical musician. I find that if I take care of my digestion, I can remember patrons’ names easily and also experience much fewer “oh! That was awkward!” moments. Also, I’m less likely to get depressed. Careful use of food as medicine can relieve so much suffering…in everyone! It is a really empowering concept. I really want to shout it from the rooftops, and often must restrain myself from going on to people that could benefit, but really don’t want to be bothered. I think that’s it. Perhaps the parents are saying “don’t try to change ME” more than “don’t try to change my kid.” People identify with their food culture so much, it is a threatening thing to have someone suggest changing what they eat.
There is such a huge chasm in our community as to what autism is and isn’t. I truly believe that there are two (or more) different “conditions” happening here – in my mind, I call them “classic” autism and “environmental” autism – I believe that many of the children on the classic end are your higher-functioning kids that do not seem to have the physical components the way the environmental (toxins) kids do – they also may have a special talent or gift, and struggle MAINLY with the social connections. My boy is a toxic mess – and as far as I am concerned, the “spectrum” that he lives on is shared with those with allergies, asthma, ADHD, autoimmune diseases and some cancers. As with most things, people tend to only focus on what lives in THEIR house. And herein lies the problem – if we, as a community, cannot agree on what we need to do with our kids, how can we ever expect the “outsiders” to help us? Until we can all agree that all of our kids do not have the same things, need the same things or want the same things, our internal struggle will keep us from moving forward as a whole.
I love this! Thank you Peacemaker!
DITTO!
Healing is not changing, it is giving your child the best shot at a successful life, something every parent wants from the day their child is born.