Differences in experiences between neurodivergent folks diagnosed as young children and those diagnosed later

I am noticing that so many more of the clinicians and teachers I work with are getting their advice and information about autism and neurodivergence from those who are autistic or have related profiles, so this is really promising. (Physicians and state agencies: Most of you are not doing any of this, and when pressed seem completely unaware that learning about autism from autistics is a thing. Do better.)

A bit of an oversight I am noticing is that a lot of folks are failing to separate out the differences in experience between those diagnosed as young children and those diagnosed as teens or adults.

Those diagnosed later typically have had the experience in which they were constantly told they were naughty, lazy, rude, defiant, unfriendly -- and had no idea why this was happening or what to do to change this. They are now going through a process of undoing all of this and learning to be their best autistic self instead of a flawed neurotypical. However, among all this mistreatment and failure to see who they really were, these folks also had the upside of people around them having expectations of them, and correcting them (even if not in a helpful way) if they didn't meet these expectations.

Folks who have always been labeled as disabled did not have this experience. People who have grown up labeled with a disability typically talk about people infantilizing them and having very low expectations of them, and of people operating under a belief that allowing a disabled person in the door is sufficiently including them. Rather than teaching disabled children to grow and excel in affirming ways, a majority of teachers and community leaders seem to approach them with the general view of "they can't help having poor skills" and fail to teach them very much. Adults who have grown up with disabilities often talk about learned helplessness and prompt dependence.

People diagnosed as young children also have the experience of being seen as public property. Everyone gets to have an opinion about how they're doing, everyone gets to give unsolicited advice. They get objectified -- people love having them in their programming, because they add diversity and everyone gets to feel good about tolerating them, but no one feels obligated to see them as whole people or actually ensure they are getting what they expect out of something. 

[Shared with enthusiastic permission]: My young adult child is autistic and has a number of obvious disabilities, most diagnosed at a young age.When they were around 8 or 9, they attended a summer art museum camp for a week. Their 1:1 aide was not able to come on the first day (at the younger ages when staff directly supervise and assist all children, they did not require an aide 100% of the time as they have later) so they attended that day without one. When I picked them up, the instructors gushed at how they had done so well, there were no issues at all, they were so good -- basically implying that they had expected an autistic child to cause trouble and have "behavior problems" despite this not being remotely my child's profile and despite clear communication beforehand that most of their difficulty with group instruction is around slow processing and a tendency to be extremely passive.

When I asked a few more questions of the staff and my child, I learned that the theme of the day had been portraits, the group had learned the difference between a portrait and a landscape and identified these in the galleries, and had made self-portraits using a mirror as well as portraits of a partner. My child had not touched any art materials and had just sat there throughout the art-making, and did not know any of the terminology that had been taught in the galleries -- they didn't understand any of what was going on, and no one had apparently approached them to repeat the directions, show examples, and let them know what was expected and instruct them how to get started. When I attempted to address this, I was told "oh, that's completely fine!" -- because apparently the goal isn't for my child to learn anything at the art camp I am paying for and at which my child is spending time and energy, but rather is to make the staff feel good by thinking they included a disabled kid. Do you not think my child had any feelings about knowing they were supposed to do tasks and didn't know how? And they say autistic people are the ones who are bad at perspective-taking. Fortunately their 1:1 aide attended the rest of the week and provided basic prompting and checking in that any adult who cared enough could have done, and they learned the other topics and created art as expected.

Similarly, I have a number of teen clients who have been diagnosed since they were young who irritatedly describe past experiences in which they realize in hindsight they were allowed to annoy people without being given any feedback, or that they participated in activities in which they were given no correction or instruction and just did them haphazardly without learning the skill that others were being taught. They describe situations similar to my child's museum camp experience in which the leaders patted themselves on the back for how they were tolerating having a disabled child present (while completely failing to include them or have any expectations for them). They have also described experiences of disclosing their disabilities and accommodation needs and being dismissed by well-meaning people with low expectations ("no, I think your language is just fine!").

The advice from late-diagnosed autistics to focus on providing space for autistic people where just being there and being themself is sufficient makes perfect sense when we are working with people who have grown up constantly criticized and told they are not enough. This is generally my approach with late-diagnosed folks or folks exploring their neurodiversity.

We need to be careful with this approach with people who have grown up labeled as disabled and have faced low expectations throughout their lives. We need to remember that these folks typically experience some combination of learned helplessness and sensitivity to others' expectations. Their experiences usually more typically mirror the experience of adults who have grown up with an obvious disability; there is ample writing and training available from adults regarding these experiences. If we apply advice from those who have had the very different experience of growing up undiagnosed to those who grew up diagnosed, it is likely we will replicate low expectations.