“The ultimate measure of a man
is not where he stands
in moments of comfort and convenience,
but where he stands at times of
challenge and controversy”

Gerard Petillo
Parents of ANGELS
Bronx, N.Y.

“The ultimate measure of a man
is not where he stands
in moments of comfort and convenience,
but where he stands at times of
challenge and controversy”

Gerard Petillo
Parents of ANGELS
Bronx N.Y.

I am so sorry, Marla. This is exactly what I hope my son never has to write. I wish someone could help you find what you need – the thing about Asp. and autism is that we KNOW how to help and support people, it just isn’t being done enough.

My 15 year old son has thrived in a public middle school because the administration and the teachers have made a decision to make it a safe and accepting place for all students. Teasing and targeting of other kids (SPED or not) is totally unacceptable. Before he was there, we were perennial pains in teachers’ and administrators’ butts, demanding that they make sure he didn’t get beaten down by failure or other kids. It was time-consuming and exhausting, and we were working with a pretty receptive district.

Something very big HAS to change in the society.

I have such severe motor skill and visuospatial deficits I can’t keep house or do any other tasks requiring dexterity and organization properly. Although I seem intelligent and have above average ability in math and a few related areas, autism related cognitive difficulties leave me unable to do anything requiring more complicated skills like creative problem solving, putting ideas together, planning actions and making decisions and limit me to rote learning. I was born without the ability to cope with change and have been breaking down since the start of year 2000, when hard times hit. I have a fragile nervous system that can tolerate only small amounts of stimulation and work and is traumatized by the everyday stresses that others take in stride.

My fragile hold on sanity depends on several comforting routines I’ve been following for years. These routines are so important to my well-being that I live in fear of disruptions like power outages and all the things that can cause them. When routines are disrupted, I get such severe meltdowns people call me a mental case. Anything that threatens to interfere with a routine pushes me into a state of anxiety only sleep can relieve. When I’m anticipating something I dread like a doctor appointment or my income tax assessment, I can’t concentrate on anything productive. The sound of my phone ringing sends me into a state of high alert when I’m not expecting a call. I go through life like a animal on the constant lookout for predators. People label me lazy for not doing much with my life and refuse to understand that merely getting through a day uses up all my energy.

Unlike other people, I am unable to develop a wide variety of interests and enjoy nothing except for a few limited activities like biking. The brain wiring abnormalities associated with the autism and comorbid disorders make it impossible for me to even build the skills needed for most leisure and other pursuits and focus on anything for for than a few minutes. All the things people turn to soothe themselves like humor, spirituality, social life and art make no sense to me and even irritate my nerves. My brain works so hard at processing that even tasks I do best are mentally draining.

Low frustration tolerance and exaggerated sensory responses turn the tasks I find hardest and can’t do properly like housekeeping into torture. The intense irritation they provoke set off destructive rages that only quitting the tasks can end. Each day is a never ending battle to get chores done and find things.

Despite the mental turmoil I live with, I’d be able to enjoy a decent quality of life if I had a suitable living environment and support like help with chores. Unfortunately, my circumstances keep me stuck in Montreal, an abrasive, crowded and strife-ridden big city with a climate that makes the few activities I enjoy impossible most days and no services at all for adults with my needs. This city is so bad for me that living here is as hard for me as a war zone would be for a normal person. Now that I no longer have an onsite advocate and working conditions deteriorated, the part time job I held for several years is no longer suitable for me. I have no choice but to struggle with it and watch myself burn out because I don’t qualify for disability here and am unable to do any other type of work.

Severely affected Asperger adults need support in order to cope with life and function in society. I have none at all except an elderly father who is unable to understand my limitations, is not always available and is fed up with his role as my only support person. My family never planned for my needs as a disabled adult because they went into denial when I was diagnosed with autism at age 3. They tried without success to normalize me and refused to see me as a special needs child. I suffered through a childhood filled with emotional abuse at home and cruel teasing everywhere else I went.

The news about Nikki struck a chord because I am also living on the edge. I am too chicken to take my own life, but can’t stop thinking about legalizing assisted suicide. After spending 5 decades in all the wrong places and struggling to keep up with responsibilities and tasks that are too difficult for me, I burnt out. I feel like I’m drowning in a sea of increasingly complicated tasks. Instead of strengthening my nerves, a life of exposure to the knocks of everyday life weakened them even more. The more I try to do, the less I get out of myself. With hard times filling my life with more and more of the changes I have trouble coping with, I am always in a bad mood and behaving worse than ever. Instead of becoming the productive and reasonably adjusted adult a properly supported high functioning autistic can become, I turned into a rebel and slipped into a pattern of dysfunctional living.

We hear about the mildly affected autistics who make stunning accomplishments and the most disabled ones who spend their lives in institutions, but no one talks about the untold number of adults like me who are muddling through life in the community, burning out and either ending their lives or spending them getting into trouble. These unfortunate outcomes show that you can’t just throw an Asperger adult into mainstream and expect him to function well without support, especially in these tough times. It is sad that they have to go to extremes like ending their lives to get anyone’s attention.

There were days that I wondered how he could stand it, given how things would go at the grocery store sometimes with some of the same sorts of sensory issues!

My son has AS and has also been assessed by our school district as “highly gifted.” Public school wasn’t always easy for him, socially. When he started middle school, things went downhill fast.

He was taunted at school and via email. He became so anxious about going to school that he simply refused to go.

We were lucky enough to find a place for him in a school for autistic kids that had a “gifted” program. Now, he is extremely confident and popular, surrounded by a group of bright, quirky kids who admire him for his strengths and not his “weirdness.”

I would tell any parent who was conflicted about sending their child to a “special” school: Don’t even hesitate.