An Open Letter to Hillary Clinton About the Realities of Raising a Child With Autism

First, as a lifelong, second generation feminist, I am so excited about your campaign and I look forward to voting for you as soon as early voting starts in my state on October 24! I am also excited that as my little 2-year-old daughter learns more about the world around her, most likely when she becomes aware of what the president is, she will see that it is an office held by a woman!

Second, as an adult on the autism spectrum and mother of an (almost) six-year-old son who is also on the autism spectrum, I feel like you are the only candidate who listens to people like us and understands our needs. I also feel there is a gap between theory and reality where services for children with autism are concerned, and I decided to write to you because I believe you can help fix this. Because my son has autism, this year has been very difficult financially and next year will prove to be more so, even though we have insurance that technically covers autism.

In 2015 my son, Buddy, started a blended pre-k class. It was general education with accommodations for special needs. Since he is academically where kids his age are but he can’t communicate well it seemed like a good fit. Instead it was a nightmare. During transitions Buddy would get overwhelmed and sit on the floor, something children with autism do when overwhelmed. His teacher started calling him “defiant” and started presenting his autistic traits in terms of him being “defiant.” If he didn’t follow directions, it wasn’t because he has problems with receptive language, it was “defiance.”

Buddy started getting extremely anxious, started sucking on his arm, and started losing his progress. He had difficulties sleeping and controlling his impulsivity. I ended up having to quit my job to take him out of school and put him in a private program for children with autism at Easter Seals (where he has been thriving, the anxiety is gone). Since it is a private program, there is no transportation offered to and from day care, and since it’s five hours a day, it’s not a friendly schedule for families where both parents have to work. So I had to quit my full time job last year to get Buddy in a healthier place for him. I get a few hours a week (ironically, even with autism, I became a counselor) seeing clients, but it does not make up the lost income much less the extra expenses from therapy.

Because while in theory Buddy’s therapy at Easter Seal’s is covered by insurance my husband gets working for the city government (with United Healthcare), in practice there is an $11,000 deductible (Buddy’s personal deductible combined with a family deductible). And even though we have met that deductible, United Healthcare is using every loophole to refuse to cover his services. Further, that $11,000 deductible is just for Buddy. If my husband, daughter or myself gets sick and has to go to the ER room, there’s another personal $3000 deductible for each of us. Right now we’re just hoping everyone stays healthy because a trip to the ER for anyone but Buddy would break us.

I am frustrated that we pay hundreds of dollars a month for insurance coverage, and United Healthcare goes and sets the deductible so ridiculously high we have to cover our medical bills anyway. While I understand therapy for children with autism is expensive, putting that investment into a young child will pay off in the long run when he grows into an adult who can support himself (something I believe is capable of happening in a supportive environment) versus becoming an adult who has to be institutionalized. Yet, facing another year of trying to find $11,000 to cover the therapy is daunting and frightening.

I like that you are the only candidate who has a plan to help families who have members affected by autism. I can see you are listening to us and responding to our needs. So I want you to be aware of the gap between theory and reality. In theory, because of IDEA, my son should have equal access to a free education, but in practice, he doesn’t. And in theory autism services are covered by our insurance company, but in practice, they are not.

I am not the only parent who had to pull my son out of school because I felt it was too toxic for him. As a counselor I’ve worked with children with different abilities who are punished in school for being different and not given accommodations for their differences. If they have dyslexia, for example, and have difficulty reading, they are told they just aren’t trying hard enough and their IEPs are seldom enforced. By the time they’re in junior high, they’re aggressive, hate learning, and facing juvenile charges, all of which I believe could be avoided with supportive school environments. Seeing that made me terrified to keep Buddy in school and made me believe that fighting the school would be pointless. That time I spent fighting the school would have been time Buddy spent in that toxic environment. It seemed more productive to find a healthier environment for him.

While in theory because of IDEA children with disabilities should have access to equal education, in practice, this does not happen. My own experience in elementary school was horrific and I didn’t want Buddy to go through the same thing or for him to go through what I see my clients do, so I took him out and paid a lot of money to give him that supportive environment. However, I am frustrated that I felt I had to take such drastic measures and make such financial sacrifices to do so.

And while your plan calls for insurance companies to cover autism services, which is definitely needed, I want you to be aware of how little insurance plans that cover it end up paying. We’re still getting billed even though the deductible has been met and when challenging them they’re throwing loopholes at us to avoid paying for it.

I’d really like to see deductibles go away. If we’re paying hundreds of dollars a month for our insurance coverage, then a deductible of $11,000 is extremely burdensome and unfair and makes me wonder why we have insurance in the first place if we end up having to pay for everything ourselves. It feels like we’re paying a lot of money for nothing. Very few people I know are able to meet their deductible in a given year. In 2015 I had a friend who was pregnant (she had her baby in January 2016) and she didn’t even meet her deductible!

Unfortunately, the school environment is more complex, and the best suggestions I have are making sure that teachers take a class about autism, what it is, what is normal for children with autism, how to engage children with autism, etc, as well as making sure student teacher ratios are low in classes where there are children with autism (my son was one of over 20 students in a pre-k class. As frustrated as I was with his teacher I could see she was also overwhelmed).

Thank you for taking the time to read this letter. I am really hopeful for November and wish you the best of luck. I am excited to finally see a woman get into office and to fight for other women and families!

 

 

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