Gluten free diets, casein free diets, elimination diets, supplements, or any combination thereof. Are they any good for people on the autism spectrum? Research still says, no doesn’t really look like it.
Over a decade ago when my children were first diagnosed with autism gluten free and casein free diets were the thing to do to treat autism. I did some digging to find the scientific basis for the belief in this special diet. What I found were studies with small sample sizes, no control groups or poorly matched control groups, no blinded or doubled trials (researchers and participants often knew what they were getting), subjective measurements of outcomes, and no clear mechanism for how the diet was supposed to work or what is was supposed to improve.
I tried a gluten free diet anyway because, hey it was only food. After a year my children were still their autistic selves. I left behind the expensive food and dubious claims about special diets.
Fast forward to today and there have been some high-quality studies done on not only gluten free and casein diets but also the various restriction/elimination diets that parents try as well as the supplements they are often encouraged to use as treatment for their children’s autism. The results are still underwhelming.
*From December 2007. This brilliant advertising campaign was supposed to raise the profile of autism or something. Still not sure why so many learned people thought this was an okay way to present autism and the people who live with autism to the world.
This is quite repulsive. In a society that seems to put self esteem above all else for children it seems that it is quite alright to degrade individuals with developmental delays and psychiatric disorders and perpetuate stereotypes about them under the guise of raising awareness.
The kids really did spend Christmas playing with the boxes the toys came in.
*Originally posted on my personal blog.
Some days it feels like being a parent requires me to be a general education specialist, a special education expert, a psychologist, a neurologist and neuroscientist, a geneticist, an education law specialist, a diplomat, and a hunting dog all at the same time. It is exhausting. But it’s what you do. Will there be a time when I’m not going to advocate for my children and others like them? When I’m dead maybe.
My kids want to go to college. That means it’s my job to make sure everyone does their job to give my children that opportunity. Sometimes that means holding my children to a higher standard than others have for them. Sometimes that means cutting them some slack. It’s a delicate balance that requires knowing the child in question and what best motivates them.
Mostly it requires being present and aware of my child and their needs. It means setting in my mind that they can achieve their goals and working alongside them to make sure it happens. I fall into bed exhausted every night. My children do as well. We all work hard fighting for our futures. It is so worth the battle.
While I’m doing all that I also get to do the regular parent stuff. The nurturing, the loving, the laundry, the cooking, the cleaning, the teaching of life skills and how to be a decent human being. I need a nap.
People, parents, advocates, therapists, medical and school professionals, throw around words like prevention, cure, and treatment when talking about autism as if they are interchangeable. These terms are rarely explicitly defined. It's just assumed that everyone in the room knows what you're talking about. This vagueness and imprecision with language muddies the waters when trying to have meaningful discussions about helping autistic people.
Let's start with the word prevention. Prevention is proactive, stopping something, something you think is bad, from happening. There are a lot of people invested in finding ways to make sure more autistic people don't happen. Their primary tool is the flood of information about the genetics of autism that has become known over the last decade or so. I'm excited about the great body of knowledge about autism that science is amassing. But as someone raising autistic children and advocating for society to value the humanity of autistic people I can't say that I'm excited about using these scientific discoveries to find ways to prevent others like my children from coming into existence.
While some search for ways to use genetic markers to eradicate autism I'm not reassured by insistences that prevention is only for the most "severe" cases. Severity here being defined as those people who would never be able to dress themselves, feed themselves, or speak. This raises several questions. Who defines the severity of autism? Right now, the criteria are arbitrary at best. When is the determination of severity made, before conception, pre-implantation, first trimester? Good luck with that moral and ethical quagmire. Arguing that people with more intense needs shouldn't exist doesn't make the argument for autism prevention any more palatable.
Throw into the prevention mix those who still cling to disproven causation theories about autism. Their beliefs about what causes autism lead them to choose from a range of preventative measures that require significant financial output, emotional investment, and leave them vulnerable to adverse health outcomes. We've already seen the results of some those choices with recurring outbreaks of previously rare vaccine preventable diseases. I don't want to repeat myself just now so I'll leave that topic alone for the moment.
Suspending a student because of behavior related to their disability is illegal. Despite this fact suspension is still the go-to response for many schools and school districts. School districts have been penalized for disproportionately suspending students with disabilities and thus violating their rights. If your school/school district is known for routinely suspending students with disabilities over behavior it is up to parents and guardians to hold them accountable for these illegal actions. If students with disabilities are routinely suspended over behavior it means that schools have failed, and failed spectacularly, at meeting their legal and moral obligations to students.
So how do we help our students experiencing behavior challenges at school? Any student with behavior challenges at school is due a Functional Behavioral Assessment (FBA). FBAs are a part of federal and state education regulations (see resource list below). The purpose of a FBA is to identify behaviors that pose a challenge to a student’s learning, identify what in the student’s learning environment precedes or triggers the behaviors, and what follows from the behaviors. FBA can also identify behaviors that help support a student in their learning environment.
April rolls around every year and every year for autistic folks, their families, and friends we become the center of a media frenzy. Some welcome this some not so much. Lost in the hubbub though is the fact that life is precious and beautiful especially when me make conscious decisions to make it so for our autistic selves, family, and friends.
It’s one of those universal truths that it is hard for special needs families to be a part of their faith communities. But there are a number of things, some pretty conventional and some maybe not so much, that will go a long way to helping special needs families feel more included and supported in their church family.
I kind of have a funny relationship with autism awareness month. I remember back when it first became a thing I was kind of hopeful that it would mean more awareness and better acceptance of and support for autistic people. Now every year I wonder what it is autism awareness month is actually making people aware of.
When I talk to people, nice thoughtful well-meaning people, who admit that they little to nothing about autism they invariably know three things about autism:
Here are a few things that I would like people to become aware of this autism awareness month.
Found on Facebook.
Autism Activism Anthropology Project
When we think of social isolation in the context of autism spectrum disorders as parents we often worry about the social isolation our children may experience. We are concerned about the hurt we assume they will feel as a result of it. This spring I was dismayed when one of my teenagers missed out on a school dance. I was determined that he would not miss another opportunity to socialize with his peers. After all I know how much those opportunities to socialize meant to me when I was his age.
When the next school dance rolled around I made sure to have all my ducks in a row. I started with my husband first. You know that whole united front thing that parenting and relationship experts talk about. My husband’s response was something along the lines of, “Dance? Why would anyone want to waste time on something like that?” He then proceeded to retell the story of his parents writing notes to school to get him out of having to go to school dances. Something about being against their religion or some such. So much for united front.
I was having the conversation about the school dance with my son on my own. It was a very brief conversation.