The autism community has always had this pissing contest. People with Asperger’s Syndrome don’t understand what it’s like to raise a child with moderate/severe autism, because they are high functioning and don’t know the pain. People advocating for lower functioning adults and children don’t get that people with higher functioning autism should have a voice in the autism world, because any decision ultimately affects them. We get the my kid was poisoned by vaccines group, and the that’s scientifically unfounded group. Then we all get the, “you just aren’t doing enough, doing it right, etc…” chorus thrown in for good measure. Then it goes into the my world of autism is worse than your world of autism. I get that autism can be bad– been there, done that, got the poop designed t-shirt. I have been in Suzanne Wright’s world– my son has epilepsy and autism, never sleeps, he shit all over himself for several years, and right now he’s 9 going on 4 years old. I get the dread, the sadness people experience knowing that their child may never grow up and leave them. And that my dreams in my golden years as a retired old bitty running marathons throughout the 50 states will probably include my 30-40-year-old son. I get all that, but I want to write about the disability of high functioning autism.
So you say to yourself what does an Aspie know about the real pain autism can cause a family, or a person. I will explain one aspect of autism/aspergers were Aspies know pain- friendships. All my life, I saw my mom’s childhood friends. She had 3-4 of them. She grew up with them. They got married, were in each other’s weddings, had children near the same age. The talked weekly. They were close. My mom would always comment, “Jo, I wish you had friends like mine.” I would usually ignore it, or say, “yeah, I do too.” Right now, the only life long friends I have are my mom and my husband. I have had “best girlfriends” cycle in and out of my life like underwear. Here’s how the cycle normally goes:
1. I lose a friend, because I’m too ______________. (fill in with intense, opinionated, smelly, sarcastic, negative, gross, shy, talkative, quiet, autistic…).
2. I find a new friend. I re-evaluate why I lost the friend in number 1, and vow NEVER to be too _____________________ (fill in the blank). So instead, I mimic my new friend. I share her opinions, I share her taste in clothing, I share so much in common with my new friend, that I completely lose myself. I even start talking like her, acting like her, becoming her.
3. We get along swimmingly for a few years, months, days. Then the real Jodi comes out. A slip of the tongue lets her know that I’m not really a staunch democrat, but actually a moderate conservative. Or that I don’t really like celebrities, I think they are egomaniacal assholes, and i don’t understand why anyone would worship them, their crap still stinks. Or paying anything over $70 for a pair of jeans is outrageous. Or kissing a boy is gross. Or whatever verbal diarrhea comes out of my mouth at the time that offends anyone’s sensibilities.
4. Then I get the, “oh I really can’t be your friend anymore, because I just don’t know you… I love you to death, but you are just not the same person I thought I knew…” In high school and college, I would have been ostracized from the group. In adulthood, I’m blocked on Facebook.
5. Then it starts all over again, with me meeting new people, and attempting to make lifelong friends.
Though in my 30s it’s now different. I don’t make it a secret anymore that I have Aspergers, I own it. I tell people straight out about my inability to relate to people. I still have problems making friends, but as of late, most everyone has understood, and has accepted me for who I am. And I think that’s one of the differences parents and advocates for the severely affected don’t seem to understand, or get. For the vast majority of my life, I have been misunderstood. I have been labeled as a freak for being afraid of things people just aren’t afraid of (like slides and swing sets), as stupid for not being well spoken (think 30 minute diatribe on how base traffic would improve if we issued everyone bikes), as being negative (when I’m really just being honest and stating a fact), or being used and abused, and feeling like there is nothing I can do about it, because I might just be reading it wrong. I can vouch that the pain of wanted to be included and not be disregarded is nothing compared to the pain of knowing your child will likely not move much past the functioning level of a 10 year old, but to state that we Aspies really don’t know what it’s like to have autism is completely false. My son does not care about social relationships, he is happy sitting in his room, playing Legos. The difference between me and my son is that I have similar social and communication dysfunctions, I am aware of those dysfunctions and how dysfunctional they are, and I long for the relationships my son could care less about, but I’m dysfunctional enough that it’s extremely difficult, if not impossible to have meaningful relationships beyond the 2 or 3 or 4 people who actually take the time to look past my communication and social missteps and really get to know me.
And as far as Autism Speaks is concerned (as this is what inspired me to write this), please consider this when you are looking at your child. Autism Speaks is coming from a place of negativity. They see autism as a tragedy, they don’t see beyond the negative symptoms of the condition. Autism is not a tragedy. I hate the negatives of autism as much as the next guy, but there are so many positives in this world that erase the negatives. For every bad “autistic day” my son has, he has far more good “autistic” days. And the bad “autistic days” are fewer and fewer and farther and farther in between. Even though it’s hard to admit, people who have higher functioning autism may not be able to speak for others with autism, but they do have insight on the emotions of really feeling what it’s like facing social and communication dysfunction. Listen to some of what we are trying to say.