Partial Face Blindness and Late in Life Autism Diagnosis
by Jeff Baker
I am what you call a “late in life diagnosed” autistic person. I wasn’t diagnosed until I was in my early 30’s after my kids received their own diagnoses. Don’t get me wrong, my diagnosis makes sense. Like, a lot of sense… it basically explains every unexplained event in my life, including countless times I drastically misinterpreted social signals and read too much or not enough into different relationships in my life. And the signs were all there if we had only known to look for them. I remember one time sitting with my spouse at a dinner party and them asking me if I was alright. I responded by saying “yeah, just, you know how when you’re really tired you stop being able to see people’s faces?” they looked appalled when I said that and told me that’s not a normal thing that happens to people. Well, it may not be normal for allistic and neurotypical people but it’s been a commiserate experience between many autistic people I’ve met (also many people who didn’t know they were autistic and later also received late in life diagnosis fell down the autism rabbit hole by also identifying with that experience, so if you were just thinking “that happens to me sometimes” baby, I have news for you…)
But like I said, it explained a lot. I have facial tics, stims, I used to engage in palilalia which is the silent repetition of phrases I’ve already said. But we didn’t put it together until my kids were diagnosed. We had gone through the diagnostic process with them, seen multiple specialists who all referred us to other specialists until we were sitting with the special specialist who made the diagnosis, and he was explaining some of the autistic traits he can see in them and others we can expect to observe as time goes on. As he was speaking I interrupted and said, “yeah but that’s all normal kid stuff, I used to do a lot of that stuff. I STILL do a lot of that stuff.” and he just looked at me the same way I just looked at you when you said you also can’t see faces when you’re tired, and said “yes, well, autism is genetic…” So I spoke to my doctor, who couldn’t for the life of her figure out why I would want to know I was autistic, and she referred me to a diagnostic psychiatrist who made the official diagnosis, along with some others like mild tourettes (the facial tics) and that was that.
It took a considerable amount more getting used to than I had anticipated. It made me question every interaction I’ve ever had in my entire life. It was really a mind fuck. But, after I worked through all of that, knowing that I’m autistic has given me a great deal more peace. It has helped me accept who I am, and helped my spouse understand and know me in deeper and more meaningful ways. I don’t love being autistic all of the time, there’s this weird thing that happens when uneducated people learn I’m autistic you can see their face and demeanour change when they refer to me like they think I have a mental deficiency they couldn’t see before, and that kind of sucks. But for the most part I love my autism. It’s who I am. I wouldn’t be me without it.
And just so that people don’t get the wrong idea, people thinking I have a mental deficiency doesn’t suck because I don’t want people to think that, it sucks because they would treat me differently if I did have it. I work with many people who do have mental and cognitive deficiencies and they are normal people who want to be treated the same way as anyone else.
So that’s my story. A late in life diagnosed autistic person who was finally able to accept who they are and learn to love themselves after learning that they’re not the weirdo reject who can’t connect with normal people, but that their neurology is physically different than neurotypical and allistic people. It’s very healing to know who you are