My 9 year old son, JD, was diagnosed with PDD-NOS and ADHD 3 years ago. At the time, my husband and I were in complete denial. We went to a neuropsych eval expecting to have our suspicion of ADHD confirmed. When the evaluator asked if she could do an autism assessment, I interpreted it as her being thorough. I was shocked when the diagnosis finally came. So he can’t eat food mixed together, so he doesn’t like anything touching his head, so he needs to be the last one in the car to put on his seat belt, so he needs to be reminded to say hello to the bus driver every day. So what? Everyone has their quirks.
As the years go by, I have learned to look at JD through new eyes (Autism glasses?) and it seems so obvious. However, except for a select few who also wear these glasses, no one else seems to see it. See, JD shuts down. When he is in a crowded room with lots of noise, he goes dead weight. He may lay on my lap or at my feet in the middle of a room. He may put on his hood, wear his winter coat and hat, and stop talking. Not normal… but not attention-getting either. People notice acting out, not shutting down.
Last night we went out to dinner at a Japanese Steak House. JD was completely overwhelmed by the noise, the lights, the water features, and the unexpected change in his routine. He assigned everyone seats, making sure that he sat next to my husband. He pushed his chair next to my husband’s and was leaning his entire body weight on his dad for the entire hour we were there. He drank two Shirley Temples, but did not touch his food or say a word other than to point out to everyone that worked there that he can’t eat shrimp. JD perked up once when the chef offered to squirt sprite into his mouth from a ketchup bottle. A glimmer and then quiet again. The people who were sitting next to us commented on how well behaved our boys were. I thanked them with a smile. I didn’t expect them to see what I saw. After dinner my husband showed the boys a waterfall in the entrance of the restaurant. JD said “it’s loud!” pushed open the door and ran into the parking lot. A spontaneous night of family fun, and a quiet torture for JD.
So this rambling leads to the heart of my story. With JD often shutting down rather than acting out when challenged, we have been told by teachers, counselors, neurologists, and insurance that he doesn’t qualify for services. In three years, the only services he has received is an under qualified social worker who questioned my parenting skills, and a social skills group at school that they allow him in to pacify his mother. It’s either “he is doing too well” or “I don’t see it”. Yeah, well YOU try spending 3 hours a night on spelling homework and having to admit to your supervisor that, yes, you do have bite marks on your arm, but it was only because you asked your 9 year old to turn off Phineas and Ferb and play a game with you. Meanwhile, the same boy is looking at you with lost eyes that say, “help me; I don’t know why I’m doing this”. Yup. I don’t see it either (Bazinga!). So after spending the past six months starting from scratch to find services for JD, he finally has a home services eval next week.
And I’m wondering… will everything look OK? Or will this latest person look at JD through those autism glasses and see the struggling child I see… and love… and help him.