Why I wasn’t diagnosed as autistic during childhood? (part 4/5)
TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 4 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.
4. Awareness and Acceptance
In Israel you won’t hear much about autism. Things are smaller here, and the constant middle eastern problem is actually happening here and is not a thing that other countries put on their news when they run out of things to report about in their country.
Autism is not used as a curse word much (retard, gay, son of a whore are in the top) and we don’t really have a well funded organisation to have huge campaigns. We have our version of Autism Speaks (ALUT — אלו”ט — The Israeli Society for Autistic Children) but apparently other organisations don’t even use the words “autistic”/”autism” in their name. Our other big organisation is “ Association for Children at Risk” (Another Autism Speaks mini-version). Risk for what? When my school sent me and my classmates to collect donations for them I thought they are for children who are abused at home (in a funny way, I was both autistic and abused at home — and no one in “the system” ever did something about it). Their campaigns never explained anything about what autism is or how it is manifesting. The image that is given to the public is that autism is a kind of intellectual disability. Although autism and intellectual disabilities frequently co-occur and have some similar symptoms — but they are still different.
It is not that the health care system here is so bad, it is just that when it comes to problems that don’t manifest in a physical and measurable way — we are sort of 20 years behind the world (unless it is about combat PTSD). Asperger is something that is only now starting to be recognized here, and even during my assessment I was checked only for Asperger syndrome (AS), although I am way more suitable for the DSM-IV diagnosis of PDD-NOS then for AS. Many care givers haven't heard about the changes and the DSM-V use yet. Even the advocacy here is still very different from what you’d here in the English speaking community.
Testing, testing!
In my childhood there were instances when someone thought something is wrong with me. I was assessed in “Nitzan”( Israeli Association for Children and Adults with Learning Disabilities) — and nothing seemed wrong. My partner who has dysgraphia and dyslexia was accused by them of being “just lazy”. Both of us were assessed in the late 90’s at least my assessment (1998?) was very short and contained a 20 minute meeting of me with a lady who could write numbers upside down, as she gave me some math problems. I don’t know what my mom talked to them about.
My hearing was also checked — somewhere during my first or second grade (1995) — but it required some dexterity in picking up toys when I have heard a sound, so my result were somewhat problematic but still in the normal range. It was checked because I wasn’t “hearing” the teacher during lessons. Thing fell from my hands, I struggled with having friends and couldn’t copy from the blackboard fast enough — so I had to stay long after school to finish copying everything, but I was never tested for autism. These wasn’t seen as problematic as well, although I was the only one to stay and copy everything.
At my 5th or 6th grade (1999) I “developed a tick”. There was a hand game called “boom-click-clap” that everybody at school went crazy about and it was simple enough for me to learn (a thing which I really struggled with). It took me some time to learn it, and people weren’t very eager to play it with me so I played it with myself — which was quite cool, because you can actually do that in that particular game. So I played this game, and I played it a lot. It became one of my favorite stims, and my partners even recalls me using it at 10th and 11th grade. My mom got scared and I had an EEG test preformed on me. Nothing again.
At about the same year I was sent to a children’s psychologist because I had no friends and was physically and mentally abused by classmates and my grandmother. No one thought that they needed a treatment. The problem was clearly with me. Still, not even a suggestion for an autism assessment that I know about.
And it went on and on.
socialization
Here, if a child is weird the first thought that comes to mind is that they just seek attention. We are queer for attention. We get ourselves hit for attention. We get bad grades for attention. We are even in pain for attention.
So, if no one found anything wrong with me — it was clearly because I wanted attention. This is because conformism is a very valued in Israel, but in a really weird way.
Boys are very important here because they will grow up to be soldiers. Girls are future wombs for future soldiers (and also potential military coffee makers). If you don’t seem like you will have a problem with one of them, your struggles will be ignored. The acceptance to different people is very low, and you will have to deal with social alienation. This might sound weird to an outsider, because Israel is an immigrant society — but here is the catch: the main ideology that was forced upon immigrants for almost 50 years was to be as indistinguishable from the peers. Immigrants must look and sound as local as they can, as fast as they can. One of the compliments an immigrant can get here is that “wow, we could never guessed”.
Lets tackle another thing with awareness: this is a small country with a small population. And it means that the number of people with any given disability is lower here. Under some point it will mean that you won’t hear about some disabilities even if they are not really rare. And this happens here also with issues like anxiety and depression and even bisexuality. It is just something that “doesn’t happen”. This is also the way autism is seen here.
And acceptance? Well, autism acceptance is very simple here. If you are recruitable to the army, you can be accepted, maybe. The army is seen as the place that decides if you are good enough to be a member of the society. If you are recruitable you probably don’t have any problem. I was, and that is why no body thought that I might have a problem in my teen years, or while I was in the army, or even after — till I had a psychologist who actually talked to me because I wanted help with my struggles. This psychologist was the first professional ever to recognize that something is different in me — because she actually listened to what I had to say, and not to what my parents and teachers wanted to see — which was a child who seem so bright and smart yet so lazy, weird and stupid.
