When my son was first diagnosed autistic, he had just turned 3 years old. He had trouble speaking but otherwise we hadn’t seen any other evidence for the diagnosis. The doctors and therapists told us he was “severe”, that he “wouldn’t be able to do very much”. However, we saw a beautiful, loving, clever, independent, active little boy who had trouble speaking but still communicated, played, read, snuggled, etc. We couldn’t — and didn’t — buy into the “lost puzzle piece child” syndrome that many “experts” told us to buy into. So we kept doing what we’d been doing and didn’t subscribe to any of the information we were given — that he needed 40 hrs/week or more of “therapies” that seemed more like abuse, that he should be on restrictive diets of some sort, that he should take tons of fish oil, or any other bizarre remedy sold as a “cure” to “Autism parents”.

We also decided to home school him, since mainstream schools didn’t take nonverbal students, the “special needs” schools we visited were quite depressing and didn’t seem to offer much in the way of actual academics — just “life skills” which left a lot up to interpretation by any specific teacher on any given day. The private special needs schools we visited didn’t take autistics unless they possessed some sort of “savant skills” (yes, that was from an actual conversation with an admissions director), and the private schools that took autistics charged a fortune and still barely taught academics.

But overall, my husband and I were perplexed. What horrible things did these “experts” see in our child? Because we didn’t see them. So of course they called us “delusional”. Yet we were home with him all the time, and they only saw him a few hours a week, so it’s not as if we’d missed something major. The horrible tantrums we were told to expect never happened — at least no worse than any other child’s. We didn’t see the lack of warmth and empathy and love. Our son was and is a kind, loving child. But we kept being told how “severe” he was and how “very limited” his future would be. Kept being told to “brace ourselves” for this “limited future”.

Now at age 9, our son maybe has a few movements that might make him stand out from the crowd, and definitely still has trouble speaking freely, but he communicates all the time via body language, his own language, and his iPad. He is still is a lovely, clever, kind child who I am lucky to spend most of my days with. He loves to learn and he loves to play and he’s interested in many things. He’s also an amazing athlete who can swim, run, climb, ride, and shoot baskets better than I ever could.

Whether or not he has a future will NOT be due to his abilities or lack of abilities. He can do many things. He is quite bright. Yes, he has challenges — with talking, anxiety, regulation. But his abilities are also very strong — if people CHOOSE to look past the problems to see the strengths. Yet I still have strangers who come up to me and tell me about how they know a kid like my son who folds boxes for a pizza place, or how another kid is “doing very nicely in a group home in Connecticut”.

So what we’ve realized over the years is that what limits his experiences every day of his life, and what will limit his future experiences, is the rampant discrimination he faces from the general public for his differences. And nowhere is that discrimination more severe than in schools.

So, when they tell you “your child is very severe”, what they are actually saying is “you and your child will be treated very severely by schools and society, and this will leave all of you feeling defeated, isolated, and discriminated against”. And it is dealing with this constant, soul-crushing, dehumanizing discrimination that makes life so “severe” for them.

It is the severe treatment of the child that you should be warned about, when in fact, we were warned about our own child. Discrimination is NOT the fault of the autistic. It is the fault of society.