What is it like to raise autistic twins? It’s a question every autism parent recieves often, one I still struggle to answer. When my twins went to school the very first response that popped in my head was paperwork. Lots and lots of paperwork. Between official school forms, IEP’s (Individualized Education Plans that all special needs student receive) and working with the boy’s service coordinators, I always felt like I was drowning in paperwork. So that was my easy default answer. Autism was weird kids and paperwork. Now that school is over for us, I’ve had time to truly ponder this question. You can read about a day with autistic unschoolers here.
To be honest, it is still an almost impossible question to answer. It’s like trying to describe the color blue or what sunshine smells like. Autism is just something you live with and experience. Autism is as fascinating as it is frustrating. It’s different than raising neurotypical children, I have two typical teens, and they have always been a different kind of headache.
People usually want to know what the boys can do and what they can’t do. Can they talk? Do they like hugs and kisses? (They are very affectionate.) Do they have friends? Do they have special skills like Rainman? Most people only hear about autistic savants and severely autistic people who are completely nonverbal. Most people don’t realize that a lot of gray area exists between those two spectrums. My boys are very verbal, their speech is definitely different, and some people have trouble understanding Sahki. Keiren communicates a lot better, but he is very repetitive. He often wants to discuss the same topics over and over, and doesn’t really notice when people are bored and losing interest. As for friendships? The boys have no interest in other kids and get along better with adults than peers their own age.
Special skills. I feel like people only ask this question because they’re uncomfortable. Usually I’m asked this question after informing someone the boys are autistic. They don’t know how to respond, which is understandable. I mean you just can’t say “I’m sorry,” because that can come off as insensitive. But if the boys have some sort of special skill, or are really good at something, then having autism isn’t so bad. Now we can all just focus on whatever super power they have. I find this question a bit annoying, I know people mean well but I’d like to ask them the same thing. It doesn’t matter if they are really good at something. My boys being exceptionally good at something doesn’t change the fact that they’re still autistic. Being autistic doesn’t necessarily grant them super powers unknown in typical children. A simple “Oh, ok,” is a better response and all that is necessary.
Raising children with autism isn’t bad nor good, it just is. It is our life, our reality. Autism is as fascinating as it frustrating.
For me autism is learning more about elevators then I’d have ever imagined.
Autism is patience. Sometimes I just have to accept that sometimes progress is slow, it may take awhile before the boys make noticeable progress.
Autism is seeing the world in a totally different paradigm.
Autism is taking pictures of garage doors and mailboxes.
Autism is learning in a new way, forgetting the predictable, embracing the unforeseen. I don’t know whether they will ever be able to have jobs, start a family, or live on their own. I feel better if I just concentrate on today.
Autism is movement.
Autism is noticing every detail. Doors aren’t just doors for me anymore, they’re complex mechanisms. The same for lights and lightbulbs.
Autism is sweetness. There is a special child like innocence in them that I suspect will always be there.
Autism is different. Even though the boys are identical twins and they have a lot similitaries, they are two radically different people. There is a saying that if you’ve met one person with autism, then you have met one person with autism. Skill levels in autistics can vary widely in different areas, even in the same individual. It can also change with the environment.
My experience raising autistic twins doesn’t begin to speak for the millions of parents raising autistic children. Autism means something a bit different for everyone.