What's your autism attitude?

Join us for the Autism and Mental Health Symposium June 9, 2018 to explore barriers to access to mental healthcare for people on the autism spectrum. Register here.

​It’s well established in research literature that people with autism and related disorders have an increased vulnerability to mental health challenges. Despite this fact the mental health resources available to autistic people and their families in their communities are limited. In Onondaga County the clinician to patient ration in mental health is 1 to 202. In that number few are able or willing to meet the mental healthcare needs of autistic people. Families and individuals are left with little or no options for addressing their mental health care needs. We can do better.

Register now for our Autism and Mental Health Symposium to explore the barriers to access. Be part of the solution.

We like to divide people into neat little categories. These categories serve as shorthand for getting to know others. In this case the people being divided up are autistic. People rely a high functioning/low functioning distinction to describe a person’s perceived place on the autism spectrum. High functioning is shorthand for “can pass as not autistic at first glance.” Low functioning is shorthand for “not passing as anything but autistic anytime soon.” These two categories also serve as stand ins for verbal and nonverbal respectively when is comes to communicating with others.

The high/low divide presumes that the autism spectrum is linear. It is not. The autism spectrum is multidimensional. It is as complex as people are. Thus far the best science tells us that autism touches on every aspect of human biology that we know makes us who we are. Autistic can’t be reduced to a linear division of function, but people try anyway.

The linear high/low gradient comes in handy for pitting the different needs of autistic people against each other. A focal point of the divide is communication. An autistic person able to utilize verbal communication is deemed to not have it that bad, not be truly autistic or to be “pretending to be just like those who have incredible difficulty.” Those who do not utilize verbal communication are portrayed in the worst light while at the same being venerated as truly autistic. Such an attitude of placing nonverbal autistic people on a pedestal while dismissing the needs of other autistic people serves only to disenfranchise all autistic people.

With the growth of internet access, smart phones, and the rise of social media autistic people, including many nonverbal autistics, have proven themselves blisteringly articulate with the spoken and written word. They hold nothing back in their criticism of what they’ve endured in the name of addressing their autism At the same time, they offer hope and encouragement to parents of the next generation of autistic people.

Yet the voices of autistic people continue to be set aside. Either because they are perceived as not autistic enough or too autistic to have an opinion of their own. As someone advocating for the respect and dignity of all people with autism this is a disheartening. What are people advocating for if the voices of autistic people aren’t engaged in their communities? Will my children be heard when they speak up for themselves? Or will they be dismissed because the gatekeepers deem them to be not the right kind of autistic?
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Comparing autistic people to each other leading to the invalidating of another’s experience is unacceptable. High or low functioning is a measure of how much work a neurotypical person thinks they must do to relate or communicate with an autistic person. Every autistic voice needs to be included in the conversation about autistic people regardless of outside perceptions of a person’s functioning.

 New York State's Autism Spectrum Advisory Board was established by law in 2016. I'm encouraging families and individuals to share their concerns with the Board. They need to hear about what works and doesn't work in New York state from the people who live with experience autism every day. You can download the October 2017 report from the Board at the link above or from this post. My own comments to the board are here.

The following are written comments submitted to the New York state Autism Spectrum Disorder Advisory Board on February 13, 2018 as part of a public forum.

The public has been asked to comment on the following questions.

• What is working in terms of services for people with autism spectrum disorders (ASD), and what models would you like to see more of?
• What can be improved of in terms of government interagency coordination?
• How can people with ASD be more accepted in their communities and in the workplace?
• What is one legislative or regulatory change that you think could make a great, positive impact for people with ASD?

First recognize that autism impacts the entire family unit not only the diagnosed individual in the family. Every member of the family needs support so that they can work, go to school, and be there for one another. Second recognize that not everyone views life with autism as a tragedy. Some of us work to make our lives and the lives of our loved ones anything but that. Third recognize that a good deal of the stress families and individuals experience come not from being autistic but from having to deal with dysfunctional systems to are supposed to help us.

Representation of autistic voices and experiences are imperative for the advisory board to make informed decisions about the lives of autistic people and their families. The distinction that is often drawn between “low functioning” and “high functioning” individuals on the spectrum is a distinction without meaning when it comes to insuring appropriate systems of support are in place for families and individuals.

The self-direct program has the potential to be a game changer in the lives of people with disabilities. For some it has been. In my experience it saddles families and individuals with an unpaid part time job filling out paperwork and resolving mistakes made by various agencies with little to show for all that effort. Time delays in processing paperwork by agencies, inconsistent policies, and little to no oversight by OPWDD make the program almost unusable. Families and individuals need consistent guidelines for agencies involved in self-direct as well as a clear grievance process with state regulators when a problem with an agency needs to be addressed.

State Department of Education regulations often function as an impediment to the education of students with IEPs and 504 plans. Families and educators need clear guidelines, free of ambiguities, that comply with IDEA. We need regulations and guidelines with flexibility to facilitate a student’s academic success rather than function as gatekeepers and roadblocks frustrating student progress. Families need a clear path to accountability for school districts that routinely fail to comply with IEPs and 504 plans. In CNY alone, several districts are notorious for forcing students and/or refusing to comply with IEPs and 504 plans. Ask the families and self-advocates in the region for the details.

On the school funding front urban and small rural school districts need adequate funding to meet the educational needs of all students. Our students’ success is continuously hamstrung by needy schools held hostage by the state budgeting process that consistently fails to consider what it actually costs to educate a student. This isn’t a call to bemoan how much it costs to educate our students. This is a call to do it right and stop scratching our heads about why our students keep failing.

Accountability, transparency, and accessibility are integral parts of service delivery for families and individuals living with autism. Meaningful oversight of agencies offering services is lacking leaving people at the mercy of a bureaucratic behemoth. We need consistent policies that don’t change midstride with zero input from the people who live with the impact of those changes. The must be recognition that there are real people with hopes and dreams impacted by policy changes. We need legislators and heads of agencies like OPWDD and OMH to listen to our needs rather than tell us what our needs are and how they are going to meet them. Families and individuals need ground floor access to the decision-making process. Nothing about us without us.

Several parents and professionals spoke today about the need for better mental health services for families and individuals on the autism spectrum. As part of a CNY advocacy group about this issue I’ve prepared information to share with legislators about the state of mental health services and the needs in CNY. That information is included with these comments.
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Decades of advocacy have produced growing numbers of autistic people who are speaking up for themselves. Whether they speak with a voice from their mouths, with the assistance of technology, or with behavior. Listen to them.
Sincerely,

Samantha JC Pierce
NeuroDiversity Consulting
Sanchia A Callender Foundation

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.
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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.

*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.
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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.
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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.
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