Autism, The Squarest Peg

Can One Disability Force a System to Change?

Ian was three years old when I first sat around a conference table at Meadowbrook School and begged for more help for him at an IEP meeting. At that time, Ian only said a few words, preferring to communicate with people through hand written notes or sign language. He read fluently, hated loud noises, and screamed a lot. I didn’t know why he couldn’t talk and what would help him, but I knew he needed something more.

The school brushed off my concerns and said that two hours a day was enough help for him, so I gave up. What did I know at that point? It’s not like anyone hands you a disability book at a baby shower, though maybe they should.

Since then, I’ve become a battle-hardened parent who knows how to push a school district for more speech therapy and knows when it’s time to call a lawyer. Those IEP meetings have etched two deep grooves between my eyebrows and shortened my life span with inadequate sleep.

Autism is a game changer for schools and social services, because our kids have multiple problems and aren’t easily put in a box. Schools don’t know know what to do with our kids. And the state has no clue what to do with autistic adults. With autism rates increasing everywhere and costs skyrocketing, solutions are urgently needed.

According to the CDC, 1 in 36 children is currently diagnosed with an autism spectrum disorder (ASD). In some states like mine, the rates are even higher. In Newark, 1 in 20 students were identified with autism - a sudden spike that has strained local resources. It’s a huge issue in every school district.

With 18 years of experience under my belt, I look back at my early lackluster attempts at advocacy for my son with huge regrets. If I had taken my son to a private neurologist earlier, rather than one assigned to me by the school district, he would have gotten an autism label at 3, instead of 5. That label would have opened the doors for specialized schools and intensive and multi-pronged therapy. I do have regrets.

But parents are smarter than I was back then. Regular pediatricians are making that diagnosis earlier and sending borderline students for additional tests. Nobody brushes the autism diagnosis under the rug anymore to save the parents’ feelings. The public is more aware of the entire spectrum of autism and there’s less stigma. So, parents aren’t afraid of that label and know what to demand from schools.

But even today’s savvier parents are struggling to get help for their kids. Schools have trouble meeting the needs of kids with this disability, because autism isn’t just one thing. Half of autistic people have cognitive challenges; the other have average and superior IQs. Some never learn to speak; others talk too much. Some are incredibly artistic; others never learn to hold a pencil. Schools can’t simply dump all the kids in one autism classroom, which would be the most cost efficient way of supporting these students.

In addition, autism requires multi-pronged support. Autistic children might need support for sensory differences, physical differences, social skills, speech, anxiety, and behavioral issues. Each one of those problems requires a different type of therapist, who bills the school district by the hour.

Autism is often joined in the disability bus with other disabilities. ADHD, OCD, Anxiety, Depression are just a few of the other issues that may accompany autism. Ian got epilepsy at age 18, which is very common with autism. Those extra issues require their own kind of supports.

Schools have been tasked with managing all the issues related to autism, even though many of those issues are not directly related to academics and perhaps should be supported during after-school hours by healthcare providers. Some insurance companies still refuse to pay for any after-school social groups or fine motor therapy and tell families that schools must provide this help.

Although schools have been tasked with caring for autism children, most aren’t doing a great job with it. Schools simply don’t have enough money in the budget to provide teachers with the right professional development, to provide students with the much needed support staff and therapists. Students end up bullied and undereducated. Schools evade their responsibilities.

Eventually, those autistic students pass through the system, and end up with a diploma and a “good luck.” What happens after that? Maybe they end up sitting on the sofa playing video games all day. Maybe they find a quiet cubicle and a good job in the computer industry. Maybe they end up on the streets. Maybe the parents complete the disability paperwork, so the autistic adult children have a little support. Maybe their parents use their own money to place their children in an awesome residential facility. Again, many possible outcomes.

For most parents, the next stage of autism support is dominated by scarcity and horrific paperwork. My son turned 21 in April. I’ve been filling out paperwork for two years straight. I thought I was done after he was accepted into the program in April. But [cruel laugh] I was wrong. More, more, more.

To tap into state funds for managing my son’s ongoing needs, I have to get a drug test, finger printing to check for a criminal history, CPR training, child abuse background check. And it has to happen this week, or my application will be null and void. Every day I deal with a new tiny third-party company responsible for some other stage of paperwork; little parasites living off the outsourced work from the government whale.

Meanwhile, the states don’t have enough housing for autistic adults. A ten-year wait list is common. Since my son does well in school, we’re looking at colleges that have special autism programs; they cost another $8-10K on top of tuition and don't really seem to provide meaningful help. He needs a job coach to help him with on-site social skills, but I have no idea how to land one of those rare birds.

With the growing number of young and young adults with autism, the total cost of supporting these individuals is multiplying exponentially. A recent academic article estimates skyrocketing costs in the near future. In 2020, the social costs of autism were around $223 billion. The researchers estimated that those numbers will be $589 billion/year in 2030, $1.36 trillion/year in 2040, and $5.54 trillion/year by 2060.

So, where’s the happy news, Laura?

Well, sometimes a crisis forces the whole system to renovate. Right now, disability services in schools and at the state level are massively broken, and the numbers show things are only going to get more broken. Schools and local towns cannot manage these needs on their own. Families can’t either. We need to talk about solutions like:

• The federal government must provide funding to create autism programs, better housing, more job training.

• If parents are expected to manage these needs full time and are unable to work, then the state will have to pay them. Perhaps parents should be paid to attend IEP meetings and all the extra burdens in the disability world. .

• Local communities and the wider region must build more housing for all disabled people in their downtowns and then find places for local employment for everyone.

• The healthcare system must assume of the costs for therapy. Schools can’t manage this alone.

The other happy news are the people themselves. My son is seriously awesome. He built his own computer this month, after watching some YouTube videos. And it works! He’s joining us on our vacation to Italy in three weeks, and unlike his older brother, he won’t roll his eyes at us or constantly be FaceTiming his girlfriend. A rule follower, he never comes home drunk and always tries hard to be perfect. Sure, he’s not going to chat for three hours about the debt limit crisis, but that’s just fine, too.

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LINKS

Special-Education System Stacked Against Families, Lawsuit Says: Proposed class action in Virginia aims to change how students with disabilities can challenge school districts for better services, Wall Street Journal

The Fight for the Soul of a School Board: In a small Missouri town, a campaign to remove literature from the high-school library forced members of the community to reckon with the meaning of “parents’ rights.”, New Yorker

The Parents Who Fight the City for a “Free Appropriate Public Education”: Children with disabilities have a constitutional right to accommodation in public schools. Securing those rights can bring their families to a breaking point, New Yorker

“Milwaukee is the state capital of reading problems. In fact, it is one of the nation’s capitals of reading problems. Few large school systems have lower reading success overall than MPS.”

“When their 7-year-old son, Tristan, who is autistic and nonverbal, arrived home from school with bruises and a lump on his head, Bronx parents Luis and Michelle Diaz began to worry.”

Personal: Lamb Chops in the backyard for our anniversary dinner. Taking the boys to the county office to submit the election paperwork.

Shopping: I’m obsessed with finding the best travel purse. Something crossbody and light. I like the ones at Lululemon.