When you get an official autism diagnosis, the doctors tend to throw all sorts of information at you, and it can get overwhelming really fast. Whether you have been fighting for this diagnosis for a long time, or it came out of nowhere as a complete shock, you try your best to understand what the doctors are saying. Then you go home and you google “autism” or “autism diagnosis” or “my son is autistic”.
Mama, I am praying that you find this post, and not something scary from autism speaks. While it may seem like the doctors sent you into information overload, there is a lot of things that they don’t tell you about autism. The doctors tend to focus on the doom and gloom, but there is so much more than that to know! So, as a fellow autism mama, I’m going to tell you what they won’t.
What They Don’t Tell You About Autism
Neurodiversity is Real
I’m willing to bet that “neurodiversity” was never even mentioned in the meetings that you’ve had with the various doctors, neuro-developmental specialists, interventionists, and therapists. So what is neurodiversity?
Basically, it means that every person’s neurology is different, which is a fact, and that no one’s neurology is better or worse than another, it is only different. There is neurotypical, which is what would be considered “normal” neurology, and anyone outside of that is considered “neurodivergent”, meaning they diverge from the norm.
Many, many autistic adults are a part of the neurodiversity movement promoting the acceptance, not just awareness, of people of all neurology. Take the time to read up on the neurodiversity movement. It will really open your eyes to the possibilities available for autistic people.
Yes, Autistic People.
I’m sure that your doctor was careful to always say “people with autism” or even “on the spectrum”. Here’s what they don’t tell you about autism. A large majority of autistic adults strongly prefer identity language over person first.
Identity language takes into account the fact that autism is deeply intertwined into their personalities. Person first language attempts to separate the person from their disability, which promotes the idea that being disabled is inherently a negative thing.
Of course, if you consider neurodiversity, having different neurology than the norm is not a negative thing. The autistic community strongly prefers identity language while people with Down Syndrome prefer people first. Use which one the community or individual prefers, not what your doctor or therapist thinks is politically correct.
Non-Verbal Does Not Mean Non-Intelligent
There are many non-verbal autistic people who use technology to make their voices heard. Being unable to verbally communicate does not mean that they don’t have a voice or opinions, and it doesn’t mean that their life is worth any less than someone who communicates easily.
Often doctors discuss the autism spectrum as a range between low-functioning and high-functioning. Well, I don’t like to use those terms, (what counts as functioning anyways?) but it’s honestly just a lot more complicated than that. One autistic person may struggle with communication but excel in music. Another might struggle with art, but exceed in math.
Just like neurotypical people, autistic people are extremely varied in their talents and their struggles. You know, almost like they’re just people, like the rest of us (sarcasm).
The Social Model of Disability is Real
You may have never heard of the social model of disability, I hadn’t either until recently. Once I figured it out, though, it makes so much sense. The premise is this: People are not disabled by their difference (either physical, neurological, or mental) but by society’s systemic barriers, negative beliefs, and exclusion.
For example, a wheelchair user is not disabled because they need a wheelchair, but by the lack of ramps and accessibility. An autistic person is not disabled because of their difference in neurology, but by the lack of understanding and accommodations in society.
It’s a small shift in the way that we view disability, but it will change your entire outlook. You see, there’s nothing wrong with your child, it’s society that has the issue.
Fair warning, once you start seeing the world through this lens, you can start to get really frustrated by the lack of support, accessibility, and accommodations.
What I Wish I Knew When I Got His Autism Diagnosis
Okay, now you may find yourself even more overwhelmed, but there is so much more to autism than what the doctor will tell you. They may be an “expert” but they aren’t living the day-to-day life. I won’t even claim to be an autism expert because I’m not autistic.
When in doubt, ask someone who truly is autistic how they feel about something. I know it’s hard to imagine, but your little one will become an autistic adult one day and you want to know that you’re on their side! If you’re looking for more information, I put together an eBook, What I Wish I Knew When I Got His Autism Diagnosis, just for you!
In this book I’m outlining ten secrets from an autism mama who’s been there. I want this book to give you a guide into some things that you may want to consider and things that the doctors won’t tell you about autism. The best part? I want to give you this eBook completely free! All you have to do to get this book is enter your email in the box below!
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