I first wrote this blog post back in October 2013. Due to the mysterious magic of google searches, it is my most popular blog post. I thought I would update it this morning, five years later.
My son has high functioning autism or Level 1 autism or whatever they’re calling it these days. Because researchers now think that there are many different kinds of autism, my kid’s variety is characterized by speech and social deficits, average to superior IQ, hyperlexia, some anxiety and sensory issues, no obsessions, no stimming.
He’s only a sophomore in small public high school right now. His story isn’t over yet. He still has two more years before graduation, and we face major decisions about his future. Sill, in those five years, he has made so much progress. He’s now completely out of special ed for math, and he participates in after school activities with the typical kids. Even in the past year, he has made stunning changes. We’re now considering future plans for him that were inconceivable when I first wrote this blog post.
Because this blog post brings in so many random parents desperate for answers, I thought I would spend the next thirty minutes writing up what worked for us. Now, I’m not a hundred percent sure that our methods for dealing with my kid’s autism are responsible for these changes. Maybe simple brain maturity would have gotten us to the same point. Maybe these methods only work for my particular kid. I can’t be certain, but just the same, I’ll share.
One of the best things that we did was cough up the $5,000 to get a complete evaluation of his strengths and weaknesses at a major university hospital. For two days, they gave him various IQ tests and speech evaluations, as we watched behind a two-way mirror. At the end of it, I ended up with a thirty page report that showed that he had a very high IQ and very poor social skills. We knew this already, but now we had a document that we could wave at the school district to make sure that they didn’t place him in a program with kids with lower intellectual or behavioral issues.
Keeping my kid in the mainstream world as much as possible has been very, very important. Being around typical kids forces him to work harder. When he’s in a program aimed at disabled kids, he acts like a disabled kid. The expectations are low to non-existent. He is allowed to drift into his own world. He doesn’t have role models.
Ian’s default is to live in his own brain. It’s easy there. Being around other people is hard. He has to be forced to do things that are hard for him. So, I make him do a lot of hard things, like marching band, offering frequent bribes and encouragement.
When he gets home from school at 3:40, he would be perfectly happy to retreat to the comforts of a computer until bedtime. He doesn’t have friends or free school sports activities to keep him in the world of people. So, I sign him for up two hours of people activities every day — Kumon, swim lessons, extra music classes, computer classes. Anything that I can find to keep him busy.
It’s not cheap. We’ve decided to pull out all the stops in his teenage years and spend whatever is necessary to keep him in the Land of People. We probably spend $1,000 per month on all those activities. In the past, we couldn’t afford a lot of outside therapies for him, and I have some regrets about all that, because it’s best to do it when their brains are young and malleable. But some say that the teenage brain is just as malleable as a toddler’s brain, so it’s not the end of the world that we missed the toddler brain window.
I no longer expect that the public school system alone will educate him or provide for all his needs. I fought against this mentality for so long, because schools SHOULD be doing all this. But giving up this fight was necessary in order to get Ian what he needs and to keep my own sanity. One person alone cannot possibly force a school system to do the right thing. Sure, I fight when I can, but I have no expectations for success.
I frequently change our after school activities. I once read a study that found that the benefits of a new therapist or a program fade after six months, so I switch often. It’s also important to keep kids from autism from ever slipping into the comfortable routines that they crave. Routines are the devil.
I network with other parents like crazy. I volunteer a ton of hours to the special needs community in town, so that I meet other parents who can tell me about new local activities. I set up a facebook page for parents in town, which now has almost 300 members.
I focus on strengths, not just the weaknesses. Because Ian is great at music and computers, we take lots of lessons in those areas. In addition to learning how to play a new Bach piece on the keyboard, he gets speech and social skills from interacting with the music teacher. The back and forth with the teacher about his fingering or the pace of the music is more useful that the formal, scripted social skills lessons that we take with speech therapists.
Schools want to group all special ed kids together in the same room, because it’s cheaper than providing each kid with an individual education. Ian now has a one-on-one aide who helps him in mainstream settings. This aide helps him in the lunch room and gym, which are chaotic, unstructured environments, and in classes when he runs across problems due his lingering issues with language comprehension. She has been a life saver.
Ian goes with me everywhere. I take him on chores to the supermarket. I take him when I check in on my parents. He goes with us to museums. I take him to dinners with my friends. Sure, I sometimes let him play on his cellphone rather than endure the chitchat of me and my friends, but he’s there with us.
We support all interests and use them to get him out of the house, among people, and to introduce him to new experiences. Ian loves music and theater. So, we coughed up an unspeakable amount of money to see the full day performance of Harry Potter on Broadway last week. We take him to the ballet and free concerts at the local church.
The university hospital found that Ian’s IQ was especially high in the area of pattern recognition. He was in the 99th percentile or something for that skill. Pattern recognition is a key part of computer programming, where there happens to be really good jobs for people like Ian. So, we sent him to a very expensive computer programming summer camp.
Learning and growth happen when he is exposed to new experiences, when there are all high expectations, and when he gets out of his comfort zone. I guess it’s true for all kids, but I think that typical kids seek out those new experiences independently and have more opportunities to be exposed to those growth moments. Ian needs a nudge to leave his brain and needs us to expose him to new things.
Money helps out a lot, so does the huge support team behind him. In addition to me doing the driving and networking, Steve and my mom take over when I get burned out. I hesitate to write this all down, because we have so many privileges that others don’t have. This recipe for success isn’t available to everyone. And that is just plain wrong. Still, it is what it is and that’s a battle for another day.
October 15, 2013
My son has high functioning autism. His neurologist gave him the diagnosis of Asperger’s when he was five, because during the exam, he took my bottle of water, turned it on its side, and began reading the small print on the label. She said that he had Asperger’s, because he was smart.
But he wasn’t and isn’t a typical Asperger’s kid. Kids with Aspergers tend to be highly verbal. They’ll talk your ears off about trains or dinosaurs or some other obsession de jour. Ian’s speech is slow, but his spatial and decoding skills are off the charts. Some say that kids like Ian are a whole different branch of autism, called hyperlexia, but the research on hyperlexia is very weak. In fact, the research on all high functioning forms of autism is so weak that they’ve gotten rid of the Asperger’s label all together now. Now, it’s all just autism.
Thanks to reforms in the 1970s, the public school system is obligated to educate my son and all the kids with the many varients of autism. With the rise in autism rates, this has become a very expensive proposition. One in 35 boys in New Jersey has an autistic spectrum disorder. The burden has fallen on local districts to cover these expenses, because the federal government never provided the promised funding for special education. With the price for autistic education as much as $100,000 per child, this creates for very unhappy local politics. At our local special education PTA, the parents practice talking points for when a neighbor accuses them of stealing their children’s education money.
Local schools do not have the resources to teach kids with severe cognitive and behavior problems. Those kids are sent to private schools around the state. The quality of education that those children receive is highly dependent on the financial resources of the town and the legal representation of those parents. Here in New Jersey, there is a move to establish county-wide autism schools to reduce the flow of public money to private schools. They are building a school like that just down the road from me. Based on parental feedback about other country-run autism services, I’m not optimistic about the quality of this school. This school will be for parents who can’t afford good lawyers.
While local schools simply cannot provide the resources for kids with middle and low functioning autism, they have established classrooms for higher functioning autism. Theoretically, these classrooms can target autism’s special brand of needs – poor attention, need for repetition and routine, and language deficits. A staff person trained in ABA therapy can help them with OCD and other behavior problems. They can be mainstreamed for strengths and have individual instruction in their weak areas.
Parents like these local classrooms, because their kids can remain in the community and not be shipped miles away. The kids can interact with typical kids on the playground. They say it is better to be the lowest functioning kid in a typical school, than the highest functioning kid in an autism school.
School districts like these classrooms, because it keeps the town money in the town and because it’s much cheaper than private schools.
The problem with these classrooms is size. There aren’t very many kids with high functioning autism in any town. Also, there is a very high level of variation within the broad category of high functioning autism. Right now, Ian, who does a 5th grade math curriculum, is in a classroom with kids who are struggling with basic math facts. There are only four other kids in the class. Teachers and aides vastly outnumber the kids in the room.
There is also no consensus about the emphasis of these classrooms. Ian’s old transition classroom pushed academics. He worked on math worksheets and reading workbooks from 9 to 3 every day. His new school puts the emphasis on social skills and blending with the mainstream kids. There is little oversight and no standards.
Autism education is in its infancy. Sadly, costs, rather than research, are driving this bus. I would like to see somebody do a “best practices” study of these classrooms for HFA. What is best AND most efficient way to educate a child with HFA?
- Look Me in the Eye: My Life with Asperger’s
- The Autistic Brain: Helping Different Kinds of Minds Succeed
- NeuroTribes: The Legacy of Autism and the Future of Neurodiversity