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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​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.

1. If a family can’t make it to church take church to them. Arrange to visit and worship with a family that can’t always make it out to regular gatherings. If there are medically fragile people in the home make sure everyone who visits is in good health before they visit.
2. Invite special needs families to events, official functions, playdates, even a simple walk around the block or over for a cup of coffee. Even if the answer has to be no the inclusive act of extending the invitation in the first place, especially for the more mundane things, helps to communicate to a family a sense of inclusion and connectedness.
3. Host a date night. Arrange for some entertaining childcare and a nice quiet meal for the caregivers. Even families without special needs to consider would appreciate this kind of thoughtful gesture from their church.
4. When you’re done giving the caregivers a bit of a break host a family fun night so that everyone can all have fun together. Arrange for activities that accommodate the unique circumstances of the special needs families. The things that make it hard for these families to take part in corporate worship probably make it hard for them to take part in ordinary family activities as well.
5. Do a little homework. Ask families about their specific situation but it is good to bring some general background knowledge to the table as well. Sometimes a family is so consumed with the basics that they don’t have the time or energy for something fancy like, “How can we include your family in church services.”
6. Contact the specialized staff in the schools in your neighborhood to learn about how they meet the needs of special needs students. Speech therapists, occupational therapists, and special education teachers are a good resource for learning about different types of accommodations that can be made in a community setting.
7. Take the initiative to incorporate tips from special educators, speech therapists, and occupational therapists into religious instruction for children and adults. Don’t expect parents or caregivers to do all of the work. Meet them halfway with careful and creative thinking.
8. Work with special needs support groups to help develop supports that will allow special needs families to be more connected to their faith community.
9. Host parenting classes or support groups for parents or caregivers aimed specifically at equipping them, practically and emotionally, for the very important jobs they do.
10. Help educate the rest of the congregation about the special needs in their midst and ways to accommodate them.

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:

1. Vaccines are involved somehow.
2. The “modern” diet is involved somehow. “Modern” is in quotes because it seems to be code for whatever is readily available to the average American.
3. There didn’t used to be as many autistic people “before.” “Before” is in quotes because it seems to be an arbitrary time period dependent on the age of the speaker.

Often some mention is made of toxins and/or chemicals in connection to one or more of the afore mentioned big three that everyone seems to know about autism even though they don’t know much about autism. This is what the fullness of the lives of my children and the lives of thousands of other children, adults, and their families and friends has been reduced to. Err...
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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