Voices From the Spectrum 32: Jesse Saperstein on Autism Advocacy

Last week Jesse Saperstein shared a little about his work with the College Experience, a program that helps students with disabilities succeed in college and learn to live independently. This week he discusses his idea for a specialized autism graduate program and offers advocacy advice for parents.

Can you explain a bit about the graduate program you are developing to place students in homes with families affected by autism? What are the benefits and challenges of creating this program so far?

The graduate school program is more of a fantasy at this point in time. I am extremely busy with the responsibilities of serving as the Habilitation Liaison for the College Experience as well as the occasional public speaking engagements. If this program happens to come to fruition, then it would allow students attending graduate school to live with and work with a family affected by autism for an entire semester. If the family cannot provide lodging accommodations, then the students will commute to the homes of these families and spend most of the day helping with the child. Part of the internship will entail going to the child’s classroom and working with the entire class as a student teacher.

The main advantage of this program is providing relief for beleaguered families because all insurance companies will never approve hiring an au pair as a justifiable use of funds. It will also allow the graduate students to figure out what field of special education they want to go into and whether the special education field is the most appropriate career. When someone says to me, “This is not for you,” I have always taken it as a personal insult, especially if a job site has only observed me for a solid day and come to this conclusion.  But there are some people who are able to tell very quickly whether or not they are able to handle a career for the next ten to thirty years. It is not fair to any child or the person struggling to be someone else. While some of our dreams may come to fruition with unrelenting hard work, there should be a touch of reality. For example, no matter how hard I try and want to study the game of football, I could never, ever become an NFL coach or anything to that extent.

All of the tips and experiences the students have working with the families will be archived in a massive directory to become a veritable well of information for families to use in the future.

What should parents do if their child is being bullied?

If a someone’s child is being bullied, then the worst thing a parent can do is accuse the child of having done something to “bring it on themselves.” This was an assumption that came up once in a while with my family and even at least one teacher. Even if a child is engaging in negative actions that seem to exacerbate their torment, a child with autism will hold onto your words with a cast-iron grip. They may think they are bringing problems on themselves every single time they have issues with bullying and/or chronic rejection.  When a child does seem to flaunt negative behaviors, it could be due to the fact they are being ignored like a plague, and this is the only way they can force people to flaunt their existence. My desire for some type of attention was so desperate at times that I would pull stunts like expelling loud flatulence in physical education class and flaunting erections by leaning back in my chair during math class.

When a child is being frequently bullied on Facebook, then it probably is not a good idea to let them have their own private computer or even allow them to have a Facebook profile if they are fairly young. It is important to try to lessen any vulnerability and teach a child about the facts of life. For example, it is often a red flag when one of your child’s peers who were always nasty to them suddenly becomes their best friend overnight, or they are contacted on the Internet by a classmate they barely know or have never even met before. I sadly was victimized by something called Cat Fishing for seven months when a young woman randomly contacted me on my AOL profile and stated how she always had an infatuation with me.

What could really make a lasting difference is if your child gives a class presentation about living on the autism spectrum and helps his peers understand the labyrinth. This has proven to be an effective tactic with all the students I worked with who have been bullied. Some of my former enemies have contacted me as an adult and offered apologies for having been unkind during our childhood years. They also wish they had known about me being on the autism spectrum and feel shame over their behavior. It would be nice if all children could be immune to bullying regardless of whether there is a disability involved, however.

It is also important for parents to remind their child on the autism spectrum that full-blown acceptance and kindness is never a guarantee even when they demonstrate dramatic improvement. I always thought at this point in my life any bullying should and would finally stop forever. For example, I try to act like a mature adult and am very cautious about every little thing that comes shooting out of my mouth especially considering that I work in the Human Service field where having one outburst could cost an employee everything. This is not always enough for some individuals, unfortunately.  One time I was actually bullied by a waiter at my sister’s birthday dinner in October 2015 where he pounded on a menu and yelled at me after I did not understand something on a fixed price menu. Even after the waiter lost his job and my family received two free meals at the restaurant, I dwelled on the experience for a very long time. I even wanted to pick up litter around my community for county-wide, positive publicity and said to my sister, “If I cannot even go to a restaurant without being pushed around by someone then something needs to change.” My exasperated father said, “I really wish that I could make everything perfect for you, Jesse! But I can’t!”

Your child should also understand that there are always going to be people who will reject them and/or want nothing to do with them. As hurtful as this is, it does not necessarily count as bullying. There are still individuals in my community who are passing judgment about how I used to be ten years ago, for example. One woman who I annoyed a very long time ago said, “My stance has not changed. I do not associate with people who have emotional control struggles.”

Furthermore, it is important for parents to not always get involved in every single instance of bullying and at least give children the chance to advocate for themselves with some amount of coaching especially if it pertains to explaining their disability. If a parent always gets involved against the wishes of the child, then it could make him/her reluctant to confide in their parents in the future. Like adults, children often want to feel like they have some control over their own lives. When parents must get involved, it is still important for a child to practice their self-advocacy skills. For example, after I had been victimized by the Cat Fishing scam, I was a part of the meeting with the principal and was able to tell him the entire story with my mother present to remind me if I were going off on a tangent or something to that extent.

What mistakes do autism advocates make?

This is a difficult question to answer considering that I am not privy to know the mistakes of many other autism advocates. But I believe that a lot of autism advocates may work against each other instead of together. Some autism advocates are striving for a cure because they feel autism is a disease that has ruined their lives and/or the life of their child. They have a right to feel this way especially if there has been only anguish and very few breaks in between. There are also those like myself who believe that autism could be a gift when we have the right attitude, and I have the right to feel this way considering that the condition has been responsible for the completion of two books with Penguin Group (USA).  Autism advocates with different viewpoints may waste energy battling each other or proving they are right instead of working together for accommodations to help those who are struggling in a world that is not always equipped to handle our challenges.

For autism advocates who are actually on the autism spectrum, a common mistake they may make is being very hard on themselves when they strive for unrealistic standards of perfection. It is common sense that such advocates are expected to remain appropriate much of the time, but chances are strong that due to being human and struggling with the autism spectrum that an advocate may say the wrong thing once in a while.  Those who are true friends and supporters are going to show mercy for such gaffes. In my opinion, Facebook should have a “Jerk Pass” that everyone should be able to use twice a year in which everyone gives them immunity for the one very inappropriate thing they say all year or something to that extent.

Autism advocates do not always take enough time for themselves in between trying to save the world. There are times it is necessary to say, “I cannot do it right now” as opposed to trying to do twelve things at once that are accomplished in a mediocre fashion. There are things that I give to myself during the year, such as a vacation to Wildwood Crest, New Jersey as well as excursions to Roller Skating rinks where I put emails and projects on a back-burner to let my mind wander with nonsensical thoughts and nostalgia regarding 1980s arcade games.

And finally, those on the autism spectrum should always remember that one size will never fit all.  I cannot help wanting other people with my condition to enjoy some of the successes that have finally become my realities. This includes romantic relationships, a full-time job, my own apartment, and having conquered the chronic tendency to be inappropriate in social situations. (Things are not perfect, but perfect enough to exist in the adult world with minimal troubles.) My favorite expression is that, “You are an adult first and somebody with a disability second.”

I am also proud of being able to ward off disability benefits considering that it sometimes seems like a Catch-22 because to keep the benefits one must not work beyond a certain number of hours a week even though there are some loopholes. It is not fair to impose these standards on other people even with the best of intentions because the public finds it condescending. There are many ways to be productive and successful depending on the person. For someone else, a very successful day could include helping with yard work and playing one hour less video games than the day before. And maybe the next day will be even better.  There is no shame in someone collecting Disability Benefits and not everyone with autism has to be employed in order to make a contribution. Volunteering is also fine for some people, especially if it is the best they can do at the time.  In my opinion, being productive should include a drive to wake up at least four days a week before nine o’clock in the morning and having some activities that allow us to hone our developing skills.

 

Jesse Saperstein is also the author of Atypical and Getting a Life with Asperger’s, which are both published by Penguin Group (USA). You can find out more about Jesse by visiting his website: www.jessesaperstein.com and YouTube Channel: www.youtube.com/jessesaperstein for additional resources.

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