If you just read that title and are all set to argue, you might be autistic, but please hear me out.
Most people who say they hate
autism (and yes, I am sometimes one of them) don't see autism as synonymous with
autistics any more than depression is synonymous with the depressed. I
have depression and I HATE it. I have two children with autism and sometimes I hate
autism. I do not and could never hate them.
Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself. OK, let's take a closer look at that. In our family, my older son, Joe, is
fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint. My younger son, Alan, is
frequently violent, OCD and mostly non-verbal. Both have depression on occasion. OCD, violence, and depression are all considered co-morbids. And according to autistics, it is okay to hate all of those
So, why is it okay to hate the co-morbids but not the core? While
Alan's core disorder is autism, Alan IS NOT autism!!!! He is so much
more. He is giggles and cuddles and adorable blue eyes. He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.
The autistic point of view (I believe) is that since it is an operating system they are synonymous. The person cannot be separated from the disorder. I suppose they are saying it is like race. How can you separate the race from the person? You can't. So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos."
And yet, I think that telling people not to
hate autism can be very alienating to families who are struggling just
to get through the day living with autism. Cleaning
up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory
induced pain -- these are all things that are intrinsically difficult. I
can't imaging anyone cleaning up vomit or watching their child get
called names for being different having a lovely warm fuzzy
feeling about autism. Some families are in the trenches with these things and they
can't see beyond their current, overwhelming, sometimes painful circumstances.
These are some of the families who probably say they hate autism.
an autistic were to tell me that he hated neurotypicality, I would not
take that to mean that they hated me. I would take that to mean that I
confused them and/or they didn't understand me. Is he a better person if he spells out that important difference? Perhaps. But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.
Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them. They are using what I would call a neurotypical shorthand. If autism is an operating system, I would have to say it is an Apple. I am a PC/Android person through and through. Anyone who knows me well has heard me complain of Apple products. As an operating system, it confuses me. So yes, I have said I hate Apple on occasion! That said, I love both of Alan's iPads for very different reasons. His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment. So I may hate Apples, but I don't hate Alan's iPads.
I have heard more than a few people say that they hate their hair (usually when it is curly). I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids). So if it
is okay to hate part of you and wish it could change, why is autism different?
If my older son were to tell me that he hated his little brother, I would jump all over that. If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him. Alan's autism affects everything
about our family -- our ability to go out to dinner, over to Grandma and
Grandpa's house, vacations and even the grocery store -- and so we all
are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person.
He doesn't ever say it, but sometimes I think Joe hates his own autism.
He hates that it is hard for him to make and keep friends because he
perseverates on bizarre topics. He hates that he does things so much
differently than his peers. That said, the kid has incredible self esteem! So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.
live in a world where we fiercely defend freedom in so many realms. It does seem a little bit unusual to me that we are also quick to
condemn people who don't feel the same way we do about autism. Am I a
better person if I love autism than if I
am overwhelmed and confused by it? Regardless of how you feel about autism,
all people deserve respect. Perhaps instead of getting angry at, or
feeling sorry for, people who hate autism we should attempt to
understand why they feel that way. These
families don't need condemnation. They need support and understanding.
In many ways it is like telling a drowning person not to hate the water. In
their overwhelmed state, that kind of choice is not really possible for
them. But, lift that person out of the water and into a boat and then
they can see how beautiful the water is. They can see it in a different
light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.
We aren't going to get very far spreading the message of autism
acceptance if we judge those who don't agree with our viewpoints. Instead, if we work to understand and support others, we may find that
we don't have so many differences after all.