Nick, 16, went to a new dentist yesterday–a dentist for adults, since he didn’t want to see the pediatric dentist anymore (where he’d had successful appointments for several years with an understanding staff*). So I scheduled him with mine, and at his request disclosed nothing about him ahead of time. He wanted to handle it completely on his own.
There was one hiccup when the friendly hygienist put her hand on his shoulder as she guided him back to the exam room and he told her not to touch him, and she took that as “don’t touch me AT ALL” and came to me, all worried because she couldn’t do her job without touching him LOL and clearly expecting me to explain what the deal was with this kid…. I explained the difference between necessary touch and social touch and had a private moment with Nick where I reminded him that if he disclosed his autism or sensory issues, he might gain more understanding from the staff, and he reminded me that HE COULD HANDLE THIS HIMSELF. 🙂 So, deep breath, I conveyed exactly that to the hygienist and left them to it.
From then on I bided my time in the waiting room with crossword puzzles on my phone, got a reassuring thumbs up in passing from the hygienist in the doorway, and after many x-rays, a cleaning, an exam, and a fluoride treatment, he emerged WITHOUT even needing to grab the keys I held up and go directly to the car! I still don’t know what, if anything, he chose to disclose, and that’s OK because it’s *not about me*.
It has been a long, hard road, and there is no finish line (oh, believe me, we still have our struggles), but I have to share these experiences because I keep learning over and over that 1) presuming competence is the best way to provide opportunities for success, and 2) I never would have expected this when he was younger and I want to remind everyone that our kids do grow and learn and our hard work does pay off. 🙂
*How did we do that? Like so:
1) Spent a lot of time talking with Nick about what to expect
2) Shopped around for a dentist who specializes in special needs kids, who…
3) Arranged appointments with no one else in the office (so, no screeching toddlers)
4) Did all the work herself instead of handing him off to hygienists
5) Put Nick in control by stopping whenever he said stop
6) Told him everything she was going to do before she did it
7) Minimized unnecessary conversation and eliminated unnecessary touch.
(Portland-area readers, this dentist is Cynthia Pelley at Little Smiles in Sellwood. Highly recommend!)
I enjoy your blog very much, but I’m having some “I don’t get it” moments with this one. I get that it’s Nick’s choice to disclose, but not getting why it’s a great thing that he got through the dentist appointment without disclosing that he is autistic. There are many situations where disclosing isnt necessary (“Hi, my name is Joe and I’m autistic. I’d like fries.”) But, first time at a new dentist is a situation where it would be reasonable and appropriate to self-disclose. Not disclosing, especially since a reason isn’t given, leaves the reader to infere that since he no longer wants to go to the pediatric (read: child/baby) dentist) that he didnt want disclose to avoid being treated like a child at the adult dentist. Getting necessary accommodations isn’t being treated like a child, and asking for them is self-advocacy. Not disclosing in that context comes across as hiding and being embarrassed to self-advocate. I don’t mean to denigrate his choice not to disclose, which is completely his decision, but I just dont see why that decision is necessarily one to be applauded as the result we parents are hoping for our chikdren as they grow into adulthood. My goal for my kids is to be a person who is confident enough to self-advocate by disclosing where reasonable and appropriate.
Perhaps I should have titled my piece “It’s Not About Me” because that is the point I was trying to make, not that it was necessarily great that he succeeded without disclosing. I completely see what you are saying, and if it were me (and it is, often, with my ADHD) I would freely disclose and advocate. And I think (but don’t know for sure) that he may indeed be embarrassed to disclose–though I must point out that he did advocate for himself, even if he did so without invoking a diagnosis. But the point is that at this stage of his life, it MUST be his own choice for whatever reasons are there. He doesn’t owe it to anyone to be “out” if he doesn’t want to be. He is making his own choices and I am learning to let go and allow him to do so–not so different from most teenagers and parents but perhaps exceedingly more difficult for us. 😉 I will continue to treat autism in a matter-of-fact way and not as something to hide, but his feelings and choices about his own autism will always be valid, and no doubt changeable, and I will honor them because it’s not about me. 🙂
That’s right… It is ALWAYS the person with the disability who decides about disclosure. Obviously when a very young child or otherwise these is danger that rule can be broken but AS A RULE it is not about anyone but him.
Very interesting post. As a person with CP I prefer to disclose and often it is for my own safety. Everyone is different about disclosing disability and the topic fascinated me so I included the topic in my film about disability here http://cripvideoproductions.com/astrokeofendurance.php