A View From The Road Not Taken

By Amy Gravino, M.A., ABA

Amy Gravino is an Asperger’s Syndrome College Coach, Consultant and Autism Advocate.

I would never have known there was anything wrong with you until you told me.

You’re so smart.

I can’t believe you have autism.

The words swirled through my mind as I stood there, eyes glued to the sign on the door:

“OFFICE OF DISABILITY SERVICES.”

All the years of doubt and confidence, progress and decline, lurching forward and stepping back rushed out from my memory, and time seemed to grind to a halt. A thin sheen of sweat covered my palms and I swallowed hard, down into the pit of my stomach, where a knot of fear was rapidly growing.

I don’t need to do this. I’ll be fine.

When you have Asperger’s Syndrome, people expect things from you. You push yourself hard, and after enough time goes by, you get to the place where the result of that pushing is that you’ve accomplished things. That’s when you begin to expect things from yourself.

What you do not expect is to struggle.

I don’t need help. I can do this on my own.

“High-functioning” is a misleading term. You can be intelligent, understand things, know how to add and subtract and conjugate and construct a sentence; but if you can’t ask for help sometimes, then you cannot hope to function.

The voice inside my head told me that I could do it on my own, and that’s what I believed.  People looked at me a certain way, of that I was aware, and my greatest fear was doing anything to inadvertently change that.

Walking through this world as a person on the autism spectrum, you are constantly under the lens of an invisible microscope. People are looking closely, and you become afraid of what they might see.

Most of the support services that currently exist for adults with Asperger’s Syndrome rely on the individual to seek out and utilize these services on our own. Yet this latter step becomes impossible when we find ourselves unable to even set foot in the door.

Many of us are college-educated, with degrees ranging from Bachelors to doctorates, and keenly aware that the world has set certain standards for us. The shame of not being able to live up to these standards can be crippling. A smart, seemingly capable person asking for help faces unimaginable scrutiny, and for many of us with Asperger’s Syndrome, that is what keeps us from accessing services: The overwhelming anxiety and fear of being judged.

Through trial and a whole lot of error, I have learned in my life that getting help does not equal weakness; it means having the strength to know that you need assistance and are doing something about it. It is my wish that all individuals with Asperger’s Syndrome realize this and understand that not being good at something is not a reflection of who they are. It simply means doing what is necessary to become better at it.

For service providers, I urge you to understand our fears and to do what you can to help temper them. We see your flyers and read your e-mails, but never want to think that they apply to us. One way of de-stigmatizing support services is to focus not on pointing out the weaknesses of individuals with Asperger’s Syndrome, but instead finding ways to use our strengths to remediate them.

It may not happen overnight, but through the alleviation of that anxiety and the decrease, if not complete removal, of the fears associated with asking for help, individuals with Asperger’s Syndrome and service providers can work together to make it truly possible for us to walk through that door.

A Sibling’s Perspective

By Nick Lombardi, ASF intern

Nick Lombardi, recently recognized by the town of Greenburgh for his service to the autism community, has a younger brother with autism.

At five years old it was explained to me that my brother was going to be different.  I didn’t understand what different meant – to me he was just my three year old brother. I played with him and understood him perfectly even though he didn’t speak. He was my buddy.  

I remember how taking Joey anywhere became a major operation of enormous work and planning.  Once we arrived the challenge didn’t stop there, Joey took off his shoes and ran like the wind. The danger and stress of losing Joey was constant and so were the looks of disapproval, irritation, and sheer disgust.
My family was scolded – “Why can’t you control him?” often while we were ineffectively trying to peel Joey off the ground or holding on to him for dear life.  No matter how many times we tried to explain, the criticism never stopped. This hurt our family’s core and it hurt Joe too, it was right there on his face.
My frustration grew – others shouldn’t judge Joey.  I was nine years old when I realized my brother needed a voice, and I had to give it to him.

I designed a pin that would be clear and useful.  My message was simple and straightforward, “I’m not misbehaving I have autism please be understanding.”  I started with 6 pins.  Joey wore them everywhere and like magic, they worked!  People looked at Joey, saw the message and the tone changed.  HE HAD A VOICE!!  
Other families needed them.  I started selling them to pay for the cost.  I shared my pins and now they are in two languages and sold all over the world. I have trademarked it and have my own Facebook and web page ( www.autismbutton.com  and www.facebook.com/autismbutton?ref=hl) and even expanded my line with patches and tee shirts.  

I speak at many autism benefits and schools, have appeared on TV news programs and in newspapers, been listed as one of autism’s  advocates of the year with Hilary Clinton and hosted a web TV show called Siblinghood. For years I have volunteered with special needs children and been a mentor for siblings.
Joey has changed my life forever.  Joe taught me the meaning of responsibility, passion, determination, and unconditional love.  He gave me the true gift of realizing that we can’t take anything for granted.  Not even a spoken word.  I’ve also learned that I can make a difference.   

Whenever I get tired or frustrated, I think of Joey, how hard it is for him and it keeps me focused.  I’m not sure how you can thank someone for giving you all of that.  In return, I just love him and promise to always give him a voice.

I know and understand the struggles that a sibling of someone with autism goes through. The worst feeling is loneliness; the feeling that not only does no one understand you, but the feeling that there is nothing you or anyone can do to help. That, thankfully, is not at all the reality. For me, the best way to get your feelings out and find ways to deal with your problems is by going to group therapy or simply finding someone you trust to confide in and talk to about things. Parents, as much as they love us, are not the first people we run to. I felt that my parents were already overwhelmed with Joey. I couldn’t possibly put the burden of dealing with my problems on their shoulders as well. I will admit that it was a little intimidating at first.  I didn’t know what to expect. At age eight, I didn’t really talk about Joey with anyone my age who wasn’t a cousin or very close family friend. For my friends at school, autism wasn’t exactly the most frequently used word in their vocabulary.

I remember walking into my first group meeting; I was excited but scared out of my mind too. I didn’t know what the other kids would say or think about me once I told them stories about Joey and my family. However, soon enough after doing our opening introductions and starting on our first problem, I realized that this was the place for me. Everyone could relate to me and I to them. It was the first time that I truly didn’t feel isolated or judged or like I was “the kid with the weird brother.” I felt right at home with the stories of public tantrums and struggles at home. It gave me a safe place to vent and talk about the feelings that I couldn’t ever say to my parents. It was amazing; all of those feelings that I had cooped up inside of me were now in the open, in a safe place where no one thought less of me because of it.

If I have any advice for parents it is this –  make sure you attend to the needs of all of your children. Now of course I’m not a parent and I salute the efforts of parents of children with autism and other disabilities. It’s a whole level of love and commitment that can’t possibly be measured. With that being said, sometimes the needs of the “typical sibling” (a word I hate to use) can be overlooked. I’m not saying that there is a shortage of love and commitment. In fact, there is so much love that it makes it hard for some siblings to talk to their parents. We see the struggle that they go through and can’t possibly imagine putting any more pressure on them. The best thing that parents can do is ensure your son or daughter that they are free to express their feelings, even the ones that are sometimes difficult to hear. They need to feel safe and know that if they say something they won’t be judged or punished. For some siblings, however, talking to a parent directly is too hard and group therapy or even one-on-one therapy becomes the best option.