Autism Interview #84: Michael Gilberg on Special Education Advocacy

Michael Gilberg is a Special Education and Disability Rights Attorney from New York. Michael is passionate about helping others because he knows what it’s like to navigate life without the proper support, since he lived many years without a proper diagnosis. Michael says, “My life experience of having been where your child is drives my desire every day to fight for justice for children with disabilities and their families.” This week Michael shared some of his experiences working as a disability advocate for school-aged children.

You mention on your website that you didn’t receive your Asperger’s diagnosis until you were 18. What was this experience like? Describe your growing understanding of autism and how it affects you. 

The experience was both something I denied for a long time, but also something that finally defined correctly what was going on since I had been given incorrect diagnoses for my entire life prior to that. As I have gotten older and more has been discovered about how wide the spectrum really is, I have developed a greater understanding of both myself and others. However, I find many “friends” and others do not get it, and my greatest wish would be for them to see the world through my eyes and understand my experiences. 

Hypothetically speaking, if you were going through the public education system today with an autism diagnosis, how might your experience be different? 

I think I would receive today greater emotional and behavioral support, and, in particular, would hopefully not be placed in programs for “throw away” kids who were headed towards juvenile delinquency. I also hope that a school social worker would not tell my mother I was disturbed and to throw me away.

Describe one of the most surprising/shocking cases you’ve worked on as an attorney specializing in serving children with disabilities.

This is hard because in today’s day and age, it takes a lot to shock me. I think one of the most shocking cases involves a student who tried to commit suicide twice in a public high school, including once on camera. The school saw it as no big deal, but a cry for attention. The staff did not understand this student who is on the spectrum and labeled his autistic behavior as “attention-seeking.” Fortunately that district has a reasonable school board attorney who helped facilitate a placement at the private placement of the parent’s choosing. 

What resources or programs should all schools have in place to ensure the social, emotional, and educational success of people on the spectrum?

I think all schools should have properly-trained mental health professionals, including social workers and psychologists. This training should discuss not just what we traditionally think of as autism, but how autism affects mental health, and why kids on the spectrum feel isolated. This may include teaching other students how to accept their peers who might be “different” and teaching greater social-emotional support to all students. Professionals should also listen to the parents, and when parents say there is a concern, the school shouldn’t just dismiss it.

What types of clients do you typically serve? Parents and families who have a child that has been unjustly treated? Or disabled adults?

My clients are almost all students (3-21) in the special education system looking for more or different services, a different placement, or possibly reimbursement for services or placement. Most of these children have Autism, ADHD, Dyslexia, or mental health conditions. 

What types of oversight is necessary in schools to make sure IDEA is properly enforced?

I think public schools need to be much more closely monitored by both state and federal officials who are versed in IDEA and actually understand the difference between appropriate and “progress but not appropriate.” I also think every family, regardless of income and wealth, should have access to appropriate legal services to protect their rights and ensure the district is actually complying with the IDEA–not just saying they are.

What mistakes do neurotypical autism advocates make?

I think one common mistake is thinking they understand how people with autism see the world or think. I had an experience where 2 “friends” kept putting their hands on me and wouldn’t stop because even though I asked them multiple times, they thought it was just a joke and didn’t realize they were upsetting me. Neurotypical individuals need to stop thinking we are supposed to react like they do.

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