Wednesday, February 22, 2017

Parents: Don't Hide Your Children's Autism Diagnoses From Them

Reid Knight

Dear Parent who is considering not telling your child about their autism:

Like many autistics, I found out about my autism through Google.

Unlike many autistics, Googling didn’t lead me to a self-diagnosis of autism (though I view self-diagnosis as just as valid as a professional diagnosis). My parents only told me I was autistic after looking at my internet history, and finding out that I already knew.

I was fourteen years old when, out of curiosity, I Googled the doctor I had been seeing for as long as I could remember -- and discovered that the medication cocktail I had been taking since I was a toddler was actually an “alternative” treatment for autism. For twelve years, I was given 10 to 20 pills each day, without being told what they were for. I was also subjected to Applied Behavioral Analysis (ABA) and other therapies without being told why I needed them.

Photo © Kamaljith KV, Creative Commons license
[image: Black & white photo of Indian parents holding a
toddler's hands, standing in ocean surf, seen from behind.]
My story may be an extreme one, but there are many reasons why a parent might choose not to tell their child that they are autistic. In my case, my parents claimed that my treatment cured me of my autism (although if that was the case, then it didn’t make sense that I was still following the treatment protocol, but I digress).

Along the same lines, some parents don’t see their child’s autism as a "big enough" issue to warrant telling them about the label, or they don’t want their child being seen as “different.” Other parents have expressed fears that their child will use their autism as an excuse to misbehave, or not reach their full potential.

All these examples boil down to the idea that letting a child know they are autistic causes more harm than good. Let me tell you why the opposite is true.

You may think that an autistic child won’t notice they are different than their non-autistic peers unless someone tells them, due to a supposed lack of social awareness. I have not met one autistic person (myself included) who hasn’t noticed their difference early in life. For me, noticing came through being bullied at school and at home. And since I didn’t know I was autistic, I just assumed there was something wrong with me and that I deserved what I got. I learned that intrinsically, I was less than a person, since I didn’t have a framework to tell me otherwise.

When you learn that you are less than a person, being abused becomes normalized and expected. When I was six years old, I had a meltdown in a music class due to sensory overload. The teacher’s response was to lock me in a closet for the duration of the class. It was dark. I was terrified. It was normal. I deserved it. I can only hope those aren’t the type of thoughts you want your child to have.

Which brings me to another point: because I wasn’t told I was autistic, I had no idea how to advocate for myself and my needs. Rather than using my disability as a crutch, it was not knowing about my disability that led to me being unable to reach my full potential. Trying to fit into a world that seemed out to get me wore down my physical and mental health. My grades slipped, and I got dangerously close to dropping out of school entirely. I lost the few friends I had, and became consumed with shame about myself and the things I couldn’t do, things that seemed to come so easily to everyone else. I didn’t know that with the right accommodations, I was fully capable of doing most of those things -- and that there was no shame in choosing not to do certain things that were too difficult for me.

If I had been told I was autistic before I was locked in the music room closet, maybe I would have known to ask for a break when things got overwhelming. Or maybe my teachers would have had a plan to help me de-escalate my meltdown. Or, even if I still got locked in the closet, I would have had the knowledge that it wasn’t an okay thing for an adult to do, and could have told another adult about it. But since I didn’t, I blamed it all on myself, and stayed silent.

Perhaps the worst part of not knowing they are autistic is that, inevitably, your child will find out someday that they are autistic -- whether it be from the Internet, like me, or just from an acquaintance or service provider offhandedly mentioning it. And when that happens, what will happen to the trust between you and your child? They will realize you kept very important information a secret from them for their entire life. And it’s likely you also told other family members and friends about your child’s autism, but not your child. That will make your child feel like they were the only one who didn’t know. Nobody should ever feel like everyone else knows more about their own body and their own life than they do.

And once that happens, without being able to trust their family, who will they have to fall back on for support? Navigating life as an autistic person is difficult enough without a reliable support network. Do you want your child to feel alone in their fight?

It has been more than a decade since I found out I am autistic, and I am still working through the trauma from not knowing -- and it is likely something I will continue to struggle with for the rest of my life. The tools that are helping me to heal have overwhelmingly come from within the autistic community. I can only wonder what my life could have been like, if I had been given access to such resources as a child.

Panents, you have the chance to give your autistic children coping tools. When you decide to do so is a very personal decision, and I understand that. But please consider that my negative experiences from not knowing about my own autism were already happening by the ages of five and six.

Please don’t wait too long, or the damage from your child not knowing they are autistic will already have happened.


An autistic adult who would have been better off knowing

Wednesday, February 15, 2017

Why “School Choice” Is Problematic For Students With Disabilities

Kris Guin

Students read in a classroom
Photo © World Bank, Creative Commons License
[image: Students of different backgrounds and abilities, reading books.]
During the questioning phase of Betsy DeVos’s Senate confirmation process for U.S. Secretary of Education, DeVos, a “school choice” advocate, demonstrated a lack of knowledge about, and a lack of commitment to, enforcing the Individuals with Disabilities Education Act (IDEA) -- the law that requires schools to provide a free, appropriate education for students with disabilities. DeVos's ignorance about IDEA has caused many individuals with disabilities and their families to become very concerned about their or their family member’s access to public education, and understandably and rightfully so. Individuals with disabilities and their families rely on robust implementation of laws like IDEA for equal educational opportunities.

Stemming from this concern are calls from some to pull children with disabilities out of public education, and then homeschool them. I, and many other advocates who are concerned about equal educational opportunity for students with disabilities, have some concerns about removing students with disabilities from the public education system.

There are devastating financial implications of removing students with and without disabilities from the public school system. According to the National Center for Education Statistics (NCES), the Department of Education spent $12,296 per student enrolled in public education in the 2012/2013 school year. Some of that money was spent on expenses directly associated with educating the individual student, and some of it was spent on shared expenses of educating all students like school building maintenance, staff and faculty salaries, etc. Again according to NCES, 12.9% of all students enrolled in public schools in the 2014/2015 academic year were students with disabilities who were supported by special education programs. If even half of all students with disabilities who received special education services were withdrawn from public schools, public schools would lose 6.45% of their funding. This will have devastating impacts for already underfunded schools, and compound their existing racial and economic disparities. And many low-income families can’t afford to take their children out of schools and homeschool them -- the parents have to work, and also may rely on the schools' free and reduced-cost meal programs.

As an autistic person who was withdrawn from the public school system and homeschooled because my public elementary school wouldn’t give me the accommodations I needed, I can understand parents' impulse to want to protect children with disabilities from repeating my experience now that DeVos is in charge of the Department of Education. While I was involved in the decision to withdraw me from public schools after the fifth grade, and did benefit from some parts of homeschooling, in hindsight, I wish I had continued with public education. I left the public school system thinking, “Public school isn’t for me. I don’t belong there.” which is a devastating thought for any child to have. Every child, including LGBTQ children, children with disabilities, immigrant/refugee children, Muslim/Jewish children, and children of color, has the right to a public school education, and has just as much of place in public schools as their straight, cisgender, white, Christian peers without disabilities do.

Why don’t we all stick together and fight to ensure that every public school is safe and inclusive for all, including students with disabilities? For those who are privileged to even think about homeschooling your children, why not become active with your school board instead either as a citizen or a member of one? How about being active with your school’s PTA or with a local advocacy organization that advocates for safe, inclusive schools? Why not spend your time contacting your elected officials, and urge them to support safe, inclusive public education? Why not advocate for the things we appreciate in homeschools and private schools to be available to all in public schools?