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.

We've partnered with several area organizations for an event discussing the effects of adverse childhood experiences (ACEs) in the Syracuse community. There will also be an opportunity to view the film Paper Tigers. Please join us on March 10, 2018 12pm-3:00pm at 501 W Fayette St, Syracuse, NY 13204

 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

 New York state education regulations as written and implemented throw stumbling blocks in the paths of students with IEP/504 Plans. In New York state a student with an IEP/504 Plan that includes an extended time testing accommodation can end up enduring 12 hours of testing to complete Regents exams if they have two exams scheduled on the same day. New York doesn't reschedule these exams to accommodate students with IEP/504 Plans. One option is for the student to take one of the exams months later during one of the other allowed testing period in January, June, and August. The other option is to not take one of the exams at all.

The New York State Education Department will, on a case by case basis, allow schools to petition the state for permission to administer a test over multiple consecutive days to a student with this accommodation in their IEP/504 Plan. The petition has to be made months in advance of the scheduled exam and the state still has the option to turn down the request. Parents have to know this option is available to their students and school staff also have to be aware.

The regulations in question are here. Are accessible to families, students, or school staff? No. I'm not sure how you would find them if you didn't already know where to look and what to look for. Are they clear as to their purpose and how they can be implemented? No. 

If this seems like an undue burden to place on students with IEP/504 Plans you are not mistaken. It is unclear how many students in New York state have their educational careers sabotaged by ambiguous and inflexible state regulations. What is clear is that these regulations need to give way to the precedents established by IDEA (download a copy if you don't have one) guaranteeing students with disabilities free access to an education. Right now students in New York state with IEP/504 Plan do not have that free access.  That must change.

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.

The microscopic patterns of life often repeat themselves in telescopic images of the universe. How we attempt to describe autism has a galactic representative as well. At first I thought to use the Magellanic Clouds but really any galaxy will do and colliding galaxies work even better.
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A collection of a variety of types of stars, maybe some globular clusters, gases, dust, maybe some planets around those some of those stars, and other celestial bodies zipping about

The Large Magellanic Cloud is a globular cluster in our Milky Way galaxy. Pick any star on the edge of the cloud, is it in or out? Move a bit beyond to the next star, in or out? The edges of the clouds are as fuzzy as the edges of the autism spectrum. The cloud travels through the galaxy as a discreet body. The stars in the cloud interact with each other in predictable ways.

*Originally posted on my personal blog.

In 2014 Congress passed the ABLE Act enabling families of disabled children to save for long term care expenses for their children without penalty. ABLE qualifying accounts are tax exempt and do not count against individuals when applying to government programs. As expected the ABLE Act 2014 comes with some strings attached. There are saving and spending limits for qualifying accounts as well as penalties for funds used for unapproved expenses.
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Now a bipartisan update to the original 2014 version of the ABLE Act, called ABLE 2.0 is in the works. The idea of ABLE 2.0 is to transform the current ABLE Act 2014 into what would essentially be government run estate planning.