Not to be controversial, but sometimes I get irritated by the way that online discussions about autism are mostly dominated by people diagnosed in their late teens/20s/later in life, or people who are self-diagnosed. Not because I don’t think there isn’t any value in discussing that experience, but I feel like it leads to a sort of… fantasy about what early diagnosis looks like that is often wholly disconnected from what the reality is.
Like there seems to be a pervasive idea that “if only I’d been diagnosed early, I would’ve been able to get proper accommodations as a kid/known what was up with me”, and like, as someone who did get diagnosed young (as an AFAB person, I will add, because I see this more among AFAB people, who yes do have a serious issue with being overlooked for diagnosis) this just does not check out with my experience and that of people who were diagnosed at young ages at all?
Like it’s well known that neurotypical people just generally do not know much about autistic people. If you’re diagnosed young, that does not mean actually getting accurate and detailed information about what that means. Even assuming you have fairly well meaning parents who are willing to share with you information about your diagnosis (and not, say, use it as a pejorative against their kid//try and cure their kid’s autism), they themselves might not actually have that much information to share beyond whatever their doctor told them, and it is well known that the average pediatrician doesn’t really know a lot about autism. Even if they actively go out and research for themselves, it’s very likely they stumble upon things like say, the Autism Speaks website, or other resources aimed at parents in their situation, which are most likely going to be about as helpful as that implies (read: not very).
And when it comes to the matter of accommodations, the fact remains that oftentimes kids don’t actually have a say over what accommodations they get, and more importantly, the parents who do have a say very frequently do not know what their actual rights are.
For instance, let’s say your kid has an IEP. A parent may not be told that they have a right to schedule an IEP meeting at any time, that they can request any sort of amendments or accommodations to be put on them, and that school officials have to comply.
Did you know IEPs often have goals attached to them? Very often the answer is no, but let me tell you, from what I remember of the IEP meetings I did sit in on (which I was only able to do starting in middle school), the “goals” aspect was much more emphasized than the idea of accommodations ever was. And generally those goals are things such as “turn in X% of assignments on time”, or “make eye contact X% of the time”, or other things along those lines. Essentially trying to pressure kids into meeting a certain threshold of neurotypical behavior. These goals basically almost always are recommended by special ed officials at the school.
It was never told to me that I had an ability to get rid of those goals in any way other than by meeting them, and my parents didn’t seem to realize they could either. Even when someone else outright told me those things were, in fact, amendable, I didn’t believe them because no one ever indicated that was possible.
The system doesn’t work by handing a kid a menu of potential accommodations and letting them pick which ones they think would be helpful. Accommodations are often picked out by schools (with some input from parents, but unless a parent has specifically researched accommodations, they’re probably just gonna go with whatever is on the list). And beyond the fact that kids aren’t always even told what is on that list, it can also include things like “social skills therapy” that is basically ABA-lite (which yes, speaking autistic kids can get put into, it isn’t only nonspeaking kids who end up in that sort of thing) or kids getting assigned paraprofessionals whose whole job is to stalk them and report on their behavior, or in some cases, attempt to “correct” it, something which actively leads to greater social isolation for said kid.
To speak for myself personally, I was told that I suffered from executive dysfunction (which let me tell you, not even every autistic kid gets told that), but that it was very much a personal failing that could be solved by “being more organized”/”trying harder”. There was never any mentions of the idea of ableism - if I was being socially ostracized, it was my fault for having poor social skills and I needed to learn better ones in order to fit in better, which on some level can be helpful for kids, but when that includes things like “making forced eye contact” and “being less oppositional” then that takes on a decidedly different angle than just helping a kid with social skills. A lot of the information I know about autism now doesn’t come from anything I got told due to my diagnosis, but my own research on my condition that I undertook much later in life.
So it is immensely frustrating to me to see people talk about early diagnosis as if it would have somehow led to them being more supported and more understanding of their experiences, and that’s just really not true for the vast majority of people. Unless you had a parent who was willing to do the research and listen directly to you over any of the so-called “experts”, or a special ed person/team that knew a lot about autism and how to properly interact with and help autistic kids, you probably were going to end up in a situation that varied from not much different from being undiagnosed/actively traumatizing in entirely different ways than being undiagnosed is.
I understand the idea of being able to go back and properly support your younger self, especially in terms of healing, but I think it’s also important for people to understand that the experience for actual autistic kids who get diagnosed young is not how diagnosed-as-adults people typically imagine it as being, and I really wish that there was some sort of wider acknowledgment of that.
