Seven Things Parents of Autistics Who Were Diagnosed as Adults Should Know.
Or: A Letter to Parents of Autistics Who Were Diagnosed as Adults.
There are many excellent texts for parents discovering their child autistic. I love those letters, because they give me perspective of what the parents are going through. But I haven’t found any letter to parents of autistic adults, who were diagnosed at adulthood. Letters to people just like my genetic family.
Congratulations! Your offspring is autistic! And it seems like they were autistic for a long time. They were diagnosed/started identifying as autistic in adulthood. You, on the other hand, are not sure what to do. Here is my advice, as an adult who have been in the other side of this situation. Your relationship and connection with them is important to you. This is why might find my advice useful;
- You are going to have some hard emotions — but please don’t throw them on your offspring. I know that what you are going through is scary and unexpected. You might feel lots of emotions right now. Guilt, shame, anger, fear, and confusion are common reactions. You are only now discovering that a person you raised is autistic. These reactions are understandable. We live in a world where autism is considered a tragedy. A world that sees Autistic people as scary and even dangerous. It is not our fault — but it is how the ableist society sees us. I suggest you to write down any unfamiliar words that appear in my letter and find out their meaning later. Now, lets go back to you and your emotions. They are valid. It is OK to feel whatever you feel. But please, do not pore them on your offspring . They have told you right now something that might be very private and hard. It is even more scary to them when to you. As a queer person, I find that telling people about my diagnosis is somewhat similar to coming out of the closet. Especially when it comes to parents. So please, take some time to yourself to think about it. If you will react towards your child in fear, anger, shame, guilt or disgust — you will only make things worse. Breath. Thank your child for telling you — and trusting you with such explosive information. Tell them that you will need some time. Ask them if it will be OK to ask them questions. Ask them if you can talk about that to other people — and ask who is it OK to talk about it. Your therapist, your doctor, your spouse/s, your siblings, parents or close friends. Online anonymous forums are also great. Take time to process your emotions.
- Don’t get attached to stereotypes. Are you familiar with Sheldon Cooper from The Big Bang Theory? What about Don Tillman from The Rosie Project? Well, they are not your offspring. They are also not real people, they are entertainment. It is heavily implied that they are on the autism spectrum/have Asperger’s syndrome. The jokes in such media often laugh at autistic traits and behaviors. What they represent are stereotypes, not reality. Don’t seek popular media as an self education. Don’t compare your adult child to them. DON’T tell your child that you doubt them because they are not like Sheldon or Tom or any other media trope. This is a slap in their face. The creators of these media representations haven’t talked to autistic people. Sometimes they even haven’t read the Wikipedia article about autism.
- Your child might start acting in more “autistic” way. Celebrate it! In case you don’t know, your offspring has probably been through a long process. It is very likely they have been reading for a long time about autism and autistics. They might have discovered that pretending to be non-autistic is not always helpful. They will discover some bad-ass coping strategies. That is why they will start to stim more. They might rock, flap their hands, tap their fingers, etc’. They also might start wearing anti-noise headphones, or change the way they dress. It might sound harsh, but those behaviors are not about you. It is about them, discovering ways to be more comfortable and safe in the world. They are practicing self care, and they are doing it beside you. It means they feel safe enough to be themselves with you. Isn’t it wonderful?
- Self diagnosis is valid and important. There is a harmful stereotype about people who self diagnose. It goes this way: they just skim Wikipedia and decide they are autistic. But this stereotype is untrue. From my experience people seldom claim to have a condition only based on one article. Of course, one might read an article and say “Yes, this sounds like me”, but it doesn’t mean they to identify as such. They might be anxious about it, a phenomena which is known as “medical student syndrome”. But medical student syndrome is very different from actual self diagnosis. People who self-diagnose themselves don’t just decide the have a certain condition. They do lots of research. They read scientific literature. They read things by people who actually have than condition and compare symptoms. And when it comes to autism, many people are misdiagnosed for a long time. Factors like race, assigned sex and socioeconomic status influence the likelihood of a diagnosis. people who diverge from the “standard” white autistic boy are diagnosed later, or if symptoms are more noticeable. So it is no surprise that some people are missed at childhood. I was one of them, and I wrote about it thoroughly. I can go on and on about the topic of self diagnosis, but others did a better job(5 links). And even if the self-diagnosis is wrong, there is something else that must be going on. So please, don’t undermine your child’s self diagnosis. They did more research when you, and they came out to you not to be mocked, but to be understood.
- Don’t invalidate their diagnosis. In the same note, don’t invalidate the professional or self diagnosis. Especially not in front of your offspring. Especially if you don’t have a Really good explanation for their hardships. This denial will only push them away from you. It is the same as saying “I don’t believe you have the struggles you say you are having”. It is a shitty thing to say to anyone, and especially to a person who trusts you. If you think it is “all in their head”, I have a news for you. Autism is a neurological condition. It is actually in the head.
- Accommodations = acceptance (and love). Autism is a developmental disability. And people with disabilities need accommodations in order to thrive, or just be able to do stuff. Even if they are “able” to do stuff without the accommodations they ask for, they work harder when you can imagine. Working the hardest every moment, so people will be comfortable is horrible. It is like having to carry around a huge brick everywhere you go, and not being allowed to put it down. So please, respect your offspring’s sensory sensitivities and other needs. (like keeping the TV/radio off during family meetings, asking before touching, not making a fuss about time outs in a dark and quiet rooms, etc’…) By accommodating your offspring you show them that you value them as a person, and Actually care.
- Don’t infantilize but also don’t mock them if they are don’t know something “they should”.
Their autism is not new, and they are not children in adult body. They are adults just like you, even if they have a developmental disability. Assume competence, but don’t mock them for needing help or asking for advice in topics that you think they should know about. The fact you are their parents might make it even more humiliating to them. Just…don’t.
Of course, this is not a finite list, but I think that I covered the topics I thought were the most critical to basic communication. I hope some of this advice will help you, and will make your relationship better.