By Jennifer Flinton
My 10-year-old autistic son was dis-enrolled from the adaptive summer day camp at our local recreation center today. This was a camp specifically designed for special needs children; there were actually several kids my son knew from school in the very same camp. I’m starting to detect an emerging trend here. “Special needs” doesn’t necessarily apply to my son, who is totally non-verbal and is on the more severe end of the autism spectrum.
This has happened before. I enroll my son in what seems, on paper, to be an ideal program for him – small staff-to-child ratio, lots of activities to keep him occupied, and most importantly, staff trained to understand and work with special kiddos like mine. Then, when my son and I go for our first day, we quickly realize that they really didn’t mean kids like him, with often severe outbursts of behavior, self-injurious behavior, and aggression. They want compliant kids; those kids with special needs who might just be a little physically slower or cognitively slightly impaired. Those are the kids who look good on the brochure, not my kid who’s red-faced and whose nose is running snot because he’s been screaming for the past hour.
The first experience like this was with a TOPS Soccer group in our hometown of Olympia, WA. The “cute,” compliant special needs children loved the indoor gym and were eager to participate in the group warm-up activities. My son covered his ears due to the echoes of the gym, and wanted nothing more than to leave – he kept crying and tugging at me to go. We gave up after 4 or 5 practices.
The next experience was with a social skills group for ASD children. The first year we were here in the Austin, TX area, my son did well with this group, so I was the first to sign him up the following year. I found out a week before the group was scheduled to start (and once it was too late to find another summer activity for him because they were all long since full) that the agency had decided to have a higher functioning social skills group, where they could take community field trips and such, so my lower-functioning son could not participate. Sorry.
A few weeks after that, my son’s speech therapist gave us an ultimatum…either my son’s aggressive outbursts had to drastically improve within two weeks, or he could no longer receive speech services from her. Considering we’d been doing almost nothing but trying to stop his behavioral outbursts for years, this was not a likely possibility. I was a bit surprised because the head of that speech clinic was a BCBA herself. Surely, if anyone should be able to work with behaviorally involved ASD children, it was her and her staff. So, we didn’t bother to wait the two weeks – we stopped going on the spot.
We decided to try Miracle League baseball – a baseball team specifically designed for special needs children. They assigned a one-on-one volunteer to every child, which in theory sounded perfect for my son. Well, it turned out that these volunteers were middle and high school students who really didn’t know how to handle more severe behaviors like my son has. Also, it was disappointing to them not to get the emotional feedback from my son and other children like him – if they were going to volunteer, they wanted to feel like they were having a positive impact on the children. Several families with more severely affected children were asked not to participate any longer.
Next, we tried Special Olympics. I purposely waited until the spring to try track and field, thinking that my son would be most likely to succeed with something like running that didn’t involve team participation nor a lot of rules. Unfortunately, Special Olympics also only gets a handful of high school volunteers who aren’t really equipped to do more than shout encouragements; they certainly can’t handle angry physical outbursts. Once again, a “special needs” activity where they really wanted cute, smiling kids in wheelchairs.
Finally, this summer, we opted to try the adaptive day camp at the rec center. I was unsure about it because the brochure said they had to be able to function in a 1:4 ratio. But, after talking to the camp director and supervisor, I decided to give it a try. Here we are, 1 ½ days into the camp, and I’ve already had to withdraw my son; the camp was not designed for him. The young student counselors didn’t know how to handle his behavior and the activities were too unstructured and too high level for him. I’m glad that we tried, but sad that once again, the program was intended for higher functioning special needs kids.
Don’t get me wrong, I definitely think higher functioning kids have their issues. In some ways, they have it harder – they are high enough functioning that most of the time, they “pass” for neurotypical, such that they are judged more harshly when they do have behavior or learning problems. Sometimes, their parents have to fight to get school services for them because it seems as though they don’t really need them. No one would have any doubt that my son is disabled after mere seconds of interacting with him. He is (mostly) forgiven for his behavior in public because it’s clear to nearly anyone watching that he is not neurotypical. There’s never been any question that he will get the school services he does because it’s readily apparent that he needs them. But it’s hard for me to be sympathetic because there simply are so many more things available for these higher functioning special needs kids. I find it hard to muster sympathy when an acquaintance tells me that her high-functioning ASD child is having trouble mastering the use of pronouns. Hello, my son hasn’t said a word since he regressed at age 16 months, and I’m mainly worried about him drawing blood when he attacks me and/or him smearing poop on the wall when he cannot manage to wipe himself in the bathroom. Difficulty with pronouns would be a dream problem for me to have! Whereas people with higher functioning ASD kids can do things like go to sensory friendly movies and restaurants with GF/CF menu options, we stay home because my son cannot handle even these simple things.
And before you start bombarding me with advice about different biomedical approaches to try, please know that in my son’s 10 years of life, we’ve been to 4 different DAN! doctors and tried every single supplement and dietary intervention they could think of; many of them more than once. We’ve been to Dr. Krigsman, had our son’s GI system scoped several times, and had him treated for autistic enterocolitis. He is physically much healthier now, but he’s still just as autistic as he was beforehand. The DAN! treatments helped with his physical problems but didn’t really touch the autism symptoms. We did ABA for as long as our health insurance paid for it. He is on a strict gluten-free diet (he also has celiac disease), but we noticed no benefit after trying other dietary restrictions. I’m not saying there’s nothing left to try with him and that I’m giving up hope, I’m just saying please don’t assume if we just tried “x” biomedical intervention, we’d be on the path to recovering him. I think this is just the best we’re going to get, at least for now until they come up with new, improved things to try.
So, my son and I will be home together this summer again, after all. Luckily, due to his behavior, he always qualifies for ESY (summer school), so we’ll get a few hours of respite here pretty soon. I guess that’s one of the few benefits of having a more severely affected child!
Jennifer Flinton is mom to her only child, 10-year-old Jimmy, living in Round Rock, Texas. Due to the severity of Jimmy’s autism, Jennifer works very part time for her local school district, but is essentially a stay-at-home mom. She is very thankful for her wonderful support group of other autism warrior moms in the Austin, Texas area.