Dr. Stephen Shore is a professor at Adelphi University, autism author, music teacher, and international autism speaker. He recently spoke with me about his experience living with autism and offered educational advice for autistic students. Part One of this post offers an overview of his personal schooling and suggestions for families trying to help their children transition into general education settings and get the most out of an I.E.P. conference. His answers from our interview have been transcribed below.
1. Can you describe your school experience? In what areas did you excel or struggle?
After my diagnosis, my parents fortunately refuted the initial professional recommendation of institutionalization. It was the work of my parents who provided what we would today call an “intensive home-based early intervention program emphasizing music, movement, sensory integration, narration and imitation” (at a time when the concept of early intervention programs didn’t exist), that enabled me to enter a special school at age four.
When my parents noticed they couldn’t get me to imitate them, because imitation skills are an important part of learning, they flipped that around and started imitating me. Once they did that, I became more aware of them in my environment. I think the key educational implication is that before any good work gets done, you have to develop a trusted relationship with the learner, and then you can move on. At age four, I entered that special school mentioned above, got reevaluated, and instead of being labeled a “psychotic with strong autistic tendencies and ready for institutionalization,” I got upgraded to “neurotic,” so things were looking better.
My favorite part of school was going to the library where I could get books on all of my favorite subjects. It could be astronomy, electricity, weather, earthquakes, whatever it was. I would sit at my desk reading and drawing diagrams, taking notes, and I remember even in third grade a teacher telling me I’d never learn how to do math. At the same time I had a stack of astronomy books on my desk – which the teacher never paid attention to. However, I learned enough math to teach statistics at the university level! The good news is that now a teacher probably would have seen that as a special interest and a way to teach math. I am glad to see this as an area of improvement in education over that past few years.
2. But your teachers weren’t aware of these alternative ways to teach when you were in school?
Right, that is an important difference and that is something education systems need to be even more aware of. We need to ask the question “What can the person with autism do?” And when we look at the I.E.P., I wonder what would happen if we replaced the “weaknesses’ section with the word “challenge.” Because a challenge suggests this is something you can work with, work through, work around, overcome, or maybe even just make a considered decision to ignore that challenge and move on to something else. For example, I am very low functioning in a noisy bar. I can choose to work on things that would help me in those situations, or I can decide I still lead a fulfilling and productive live not going into these establishments.
3. When should parents begin teaching their autistic children to self-advocate in school?
I think the best thing parents can do is to help their child understand their strengths and challenges, what they can do when they meet a challenge, and to engage in successful self-advocacy. That starts with finding a way to give the child choices. Of course they have to be reasonable choices. For example, you wouldn’t say, “Do you want to do your homework or not do your homework?” but rather, “Shall we start with Math or English?” It’s about building expectations, it’s involving the students in their own I.E.P. plan because that’s where the language of advocacy takes place and that’s also where appropriate and reasonable accommodations get negotiated, and a student should be part of that.
This is important because later on when they reach adulthood, instead of services and supports being provided by the Individuals with Disabilities Education Act (IDEA), adults are covered under the Americans with Disabilities Act (ADA), which is a self-serve model. Whether in college, on the job, or in the community, people with disabilities have to advocate on their own. So a student who has been involved in their own advocacy is the one who, for example, if they’re in a college classroom and they have a sensitivity to fluorescent lights, will know that asking the professor to shut off all the lights may not be a reasonable accommodation (although it could be). But they realize that perhaps a more reasonable accommodation might be doing something they did in high school such as wearing a hat, sitting close to the window, or asking if the light over their head could be turned off.
4. What strategies do you suggest that might enhance the quality of an I.E.P. conference, encourage I.E.P. execution throughout the year, or help autistic students who don’t have I.E.P.s or 504s get their needs met?
One important thing to realize is that the IEP is a legal document, so a signed I.E.P. is a contract, and you just have to follow it. Sometimes things could be missed or things could develop such that a modification needs to be made. In that case, anyone on the team can call for an emergency meeting, which has to be done fairly quickly. I think what is most important is to look at how we can leverage the student’s strengths into addressing whatever challenges they have and also involving that student in the formation of their I.E.P. to the extent of their ability.
5. Many parents send their children to ABA centers to prepare them for a typical school experience. What (if any) circumstances would have to exist in an ABA center that would quality it as a “good preparation” for school?
My doctoral research on comparative approaches suggests that different approaches work for different children. So ABA may be the best for a particular child for a specific reason, while another child with that same challenge may be better off going to someone who practices Floor Time, Miller Method, Relational Development Intervention (RDI), or some other approach.
So first of all, match the approach to the needs of the individual insofar as preparing for school, whether it’s being done through ABA, developmental approach or another approach, to best prepare that individual for further education and success in life.
One of the reasons ABA gets a bad reputation is that so often it’s practiced poorly. Sometimes practitioners of the behavioral approaches get over-involved in modifying behaviors rather than doing a solid functional behavior assessment, which I consider is a real gift given to us by the ABA practitioners. The idea is that you’ve got to find the reason behind the behavior– what function is it serving? We must find that function that is creating this behavior because as far as a person with autism is concerned, that’s the most reasonable and rational way for that person to act in the particular moment. So for the person who has very little or no expressive communication skills, the next best thing is to bite, pinch, kick, scream, or whatever because that’s all there is. So then we’d want to look at that and not say, “This is a child who is six and should have a certain vocabulary,” but instead say, “What are the developmental gaps that exist in this child and what can we do to help them communicate their wants and their needs?”
6. What is your opinion on inclusion-based vs. self-contained classrooms for autistic children?
People sometimes engage in a false dichotomy of all or nothing regarding inclusion. Ideally, I’d go for 100% inclusion all the time because the world is not a special education school. You might say it is a “regular” place. And at least at this point there are more people who don’t have autism than do, although that may change with the increasing prevalence rate. But until that happens, I think we should do what we can to include people on the spectrum, but also with the recognition that there may be situations where a school or a district does not have the resources that that person needs and perhaps they will need some sort of specialized program. The idea should be that if a student is put in a specialized program, there must be an emphasis on a plan to get them back into regular education as soon as possible.
Dr. Stephen Shore has appeared in several videos raising awareness about autism and Asperger’s, including the one below, titled: Stephen Shore Life with Autism, Music, Marriage, & Professorship — Unlimited Potential
Next week’s post will continue our discussion with Dr. Stephen Shore and feature some of his resources for parents and teachers from his involvement in the Keeping it Strong Project.