Jonny, my oldest does not have any specific diagnosis.
The geneticist is convinced there IS a genetic component involving “A SYNDROME,” with Jonny, but they haven’t pinned it down.
They are leaning toward Kabuki Syndrome (1 in 32,000), which can present (among other things), autistic-like tendencies, but can also effect other systems of the body and sometimes can even be fatal.
Jonny would be on the “mild” end of Kabuki but he has required supports his whole life.
So growing up, he has had several specialists. IEPs. OT/PT. Speech therapy. Developmental playgroups. Resource rooms. Summer school.
He’s been in and out of schools who could support him, and then COULD NOT support his academic needs.
Before any sort of “Diagnosis” connected the dots, we advocated for these services for him.
Because he needed them.
Later, When my younger son Jonah started falling behind developmentally, we advocated for services for him as well.
We had Jonah seeing several specialists and attending developmental playgroups before the word “autism” even entered our frame of mind.
And yet there were other services we could have pursued. One school offered a developmental preschool with a teacher and 2 paras AND an extended program specifically for autistic preschoolers.
But you needed an “official diagnosis” to get in.
We didn’t have one.
So Before I was even sure Jonah WAS autistic, we had him on a waiting list at two different places to be evaluated.
I knew the line would be long, and Jonah was starting preschool.
It was 9 mos before we got in… and that was because of a cancellation.
I figured, getting him evaluated was a win-win.
If they said it’s not “autism,” we could cross that off the list and continue to support him.
But if it WAS autism, I already had a plan in place to support Jonah’s needs.
The decision to get a diagnosis was as simple as that.
I pushed for an evaluation because I was advocating for my son.
And the thing that makes me upset is that we had to wait so long to get him in the program.
School had started. And Jonah didn’t have the support he SHOULD have had because he was “undiagnosed.”
But we pushed forward. And we waited.
And then in December 2016, we finally got a diagnosis.
And if I hadn’t gotten Jonah on the waiting list so soon, he may have missed the “window” for that program altogether.
We just had to have that “official” diagnosis.
The kid didn’t change before or after…
Just some stranger had to put the right “label” on him first.
And here’s what gets me.
You know, Jonny would have also benefitted from that autism program when he was in preschool…
“But Jonny’s not ‘autistic!’…”
Look.
Jonny needed support. He still NEEDS support.
We don’t have any “official diagnosis” for him… (yet)
But Jonny was in developmental preschool and received speech therapy, Occupational therapy and Physical therapy.
And he still fell behind.
And if there was a program that could have helped him, I DON’T CARE about what “label” he needed to get that support.
Here’s my point.
I call both my boys “Ausome” even though Jonah’s the only one with any official diagnosis.
Their Neurology is like their skin color as far as I’m concerned.
“Autistic. ‘High functioning.’ Level 1. Level 10. Severe. Severe-er. Neurotypical. Neuro-whatever.”
I don’t care about the labels.
Jonny needs support in certain areas. Jonah needs support in others.
Everybody is different. Everyone needs different amounts of support.
And it shouldn’t take an official label to receive that support.
If you need support, you should receive support.
If you need MORE support, you should receive more support.
And if a “label” definition changes, it shouldn’t make ANY DIFFERENCE in the support levels given.
Support services should always meet the needs of an individual. Not some diagnostic criteria.
It should be that simple.
#Ausome