I’ve wanted to write something, anything, to the parents of those newly diagnosed for quite awhile. I feel like there are many well-intentioned parents who want to do what’s right for their kids and above all, want to see them succeed, but just don’t have the right information or tools in order to do this. This isn’t the parents’ fault. This is the fault of “professionals” and the media and how we talk about autism.
Let me explain. It has now been about four years since my daughter was diagnosed with autism, and a good 5 1/2 years since we first knew she was autistic (ahem, not that something was “wrong”, but that she had developmental differences that made us investigate further). At the time, autism was an unknown to us. Sure, I’d heard the word spoken as a teenager and young adult, but I had no clue what it meant. Even as I began to google information about the disorder, I still lacked information. There were statistics (then 1 in 150) and signs and symptoms, but no information on prognosis or what happened as autistic people grew. There were horror stories and even now, the first few searches for the word “autism” lead to Autism Speaks’ website. Autism Speaks as an organization was new, though the ideas were not. The information was grim and bleak, and let me tell you, I was afraid. What would my daughter’s future look like? Would she have a future? The first two books I read about autism were by JennyMcCarthy and Kim Stagliano, and boy, was that a mistake. I knew that what they were telling me was wrong, as a college educated person who once considered a biology major.
But then, in the midst of all this awful rhetoric about how tragic my daughter’s life would be, I realized something. I realized that she and I were not so different. Oh, sure, her ability to communicate verbally was not anywhere near mine. But somehow, I managed to figure out what she wanted. I realized that though I myself had been given various diagnoses in my life (learning disabilities, ADHD, dyslexia, etc), none had truly fit before. I did a bit more investigation, and realized that if my self evaluation was correct, I was autistic. And if I was, well, my hope for my child wasn’t completely lost, because despite having these challenges, I had managed to do quite a bit in my life, and who was I, who was anyone to say “she’ll never speak, she’ll never live on her own” etc at three years old? We certainly don’t make such grand statements to parents of neurotypical children, do we?
It was around this time that the Temple Grandin movie aired, and I watched with rapt attention someone like me grace the screen. Oh, no, I’m certainly no scientist, but I could relate to the struggles of going off to college and being different, and being unable to handle certain things deemed simple by neurotypical society, but which were devastatingly difficult for me. The movie ended and I googled her, never having heard anything about her, and the more I watched her videos on YouTube, the more I saw myself, my own movements and mannerisms and I clung to that feeling of someone like me. I began googling more about autistic adults, and while there wasn’t much, I was certainly finding at least a few pieces that struck a chord with me. I read Jim Sinclair’s “Don’t Mourn for Us”, and a few other pieces by autistic adults. I discovered for the first time why Autism Speaks was not helping autistic people, and why “lighting it up blue” is a pile of crap. I became uncomfortable with the idea of “awareness” and I hoped for acceptance, understanding and inclusion.
So what would I say to parents of the newly diagnosed? This is what I would say.
It is not hopeless.An autism diagnosis is not a death sentence. Autism did not take your child away like a thief in the night. Your child, the one you brought with you into that important appointment, perhaps one you’ve waited a year or more to complete, is the same child you are leaving with. And you know what? They haven’t changed. You simply possess more information that you did not have before.
Doctors are not always right.This doesn’t mean that the diagnosis itself is wrong (though it could be; I personally was diagnosed with several disorders before doctors realized that autism fit better than any of those). What this means is that believe it or not, doctors do not always know what autism is like, what is helpful and what is not when it comes to autism. There’s been a push to promote ABA therapy. Let me tell you this: while ABA can be used as a tool to help your child acquire new skills, it can also be quite dangerous if done using the Lovaas protocol. An important read regarding this can be found here, “The Cost of Compliance is Unreasonable”. It is not essential that you follow recommendations for every therapy. Too often, parents wonder why their kids are cranky or are exhibiting new (and to them, “bad”) behavior. Logically, they think they’re doing the right thing, but 40 hours of intensive therapy, plus any speech, OT, or PT (which could add another 3-6 hours a week) is an enormous amount of time for any kid, especially a four year old.
Autistic people know more about autism than many “professionals”. There are many ways of finding autistic adults, some of whom will gladly help and/or answer questions, if done so respectfully. However, none of us really want to become a self narrating zoo exhibit (Thank you, Jim Sinclair for that quote). Google what you can, evaluate whether it’s applicable and whether its aim is to benefit you or whether it’s to benefit your child.
Dispense with the idea of functioning labels. We all have bad days. We don’t need our success and abilities judged by whether we can drive a car or not (some NT people can’t, either) or whether we can speak or not. Declaring that you don’t need your child to have a cure because they’re “high functioning” alienates those among us who are not HF by NT standards. Being able to speak, drive, live on our own, etc. is not the end all of success.
Love your child.This seems like it doesn’t even belong here, doesn’t it? Of course I love my child! This is what you’re provably thinking, right? But is it true? I know, I know, it’s a hard question to ask. If all of the things you do to help your child made them no different than they are today, would you still love them unconditionally, accepting them just as they are? Love your child. Appreciate them for who they are. Don’t let your aim be that your child no longer appears autistic, because that is draining. Appreciate every second, and realize that in the end, you may never hear the words “I love you,” but that doesn’t make it any less true.