Usually I write mostly about children or adolescents on the autism spectrum. However,  I’ve been getting quite a number of emails lately from adults wondering if they have Asperger’s Syndrome or not, so I decided to share some information from my book to be published March 25, 41 Things to Know About Autism. Asperger Syndrome (AS) is a high functioning form of autism that has only been an official diagnosis since 1994. Adults with AS who seek help with challenges they face are sometimes misdiagnosed with depression, bipolar disorder, or other mental illnesses. It is important that adults questioning whether or not they have AS, seek the services of a professional experienced in assessing AS in adults (see resources below).

If you are an adult with characteristics resembling AS, why does it matter if you get a diagnosis or not? If you are functioning well and have a job, and are happy with the life you have, then there is no reason to get a diagnosis. On the other hand, if you are struggling in important areas in your life, a diagnosis can provide a framework for understanding and learning about behavioral and emotional challenges that have seemed unexplainable until now. Although challenges in sensory integration (the ability to organize sensory information for use by the brain) are not considered diagnostic criteria, I have yet to meet a person with Asperger’s who does not have a sensory challenge of one kind or the other.

Some areas of difficulty where Asperger’s Syndrome could possibly be a factor:

• Do you have a tough time making and/or keeping friends, and don’t understand why? Or perhaps your friends are only interested in you when you’re engaged in an activity or interest that you share, but you have not built a personal relationship.
• Are parties not your thing because you feel uncomfortable or overwhelmed? Social events are a great way to meet people and they can be essential for business, dating, and even marriage. But if you are uncomfortable because you are unsure of what to wear, how to start conversations, you have a hard time reading body language, then these supposedly fun events can be torturous.
• Do you avoid social events because you can’t hear the person next to you over the hum of the crowd, you don’t like the touch of shaking people’s hands or having people pat you on the back? Do you a problem focusing on what people are saying while looking at them?
• Have you ever met someone special that you wanted to get to know better, but didn’t have a clue as to how to go about asking him /her out on a date?
• Has someone you are very fond of pointed out certain behaviors that drive them crazy and suggested that you might have Asperger’s Syndrome. Maybe there is something to their suggestion.
• Do you have a passionate interest in a certain subject or topic? Perhaps you’ve been called obsessive but you think you’re just very interested in one incredibly fascinating subject matter. This passionate topic could help you in other areas of your life, if only you knew how to use it.
• If you are a college student , do you have trouble keeping up with coursework and finishing a degree? Perhaps you could use some help in getting and staying organized and planning your time.
• Do you have trouble in getting and keeping a job that reflects your abilities even though your credentials look great on paper? It could be that you are very talented but don’t have a clue as to how to do the sell your self during an interview. Maybe the office politics are just something you don’t get, so you are routinely passed up when it comes to promotions.

Why you should get a diagnosis, if indeed you do have Asperger’s Syndrome:

• You can begin the process of learning to live more adaptively with an Asperger’s brain.
• Getting a diagnosis may help you find the strategies you need to be more successful in the areas where you are facing challenges
• It may also help others in your life understand why you are the way you are, and respond to you differently.
• There is a whole community of people who get who you are, how you think, how you feel, and that you can share experiences with.
• There are autism and AS support groups out there (on-line as well as in person) who can help you in many ways so you don’t have to feel isolated and figure everything out for yourself .
• You may be eligible for service services in areas of need thanks to having a diagnosis – perhaps help with finding a job or a place to live.

How to find out if you have Asperger’s Syndrome or not:

• Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger’s Syndrome, who is familiar with Aperger’s Syndrome in adults.
• One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), http://www.grasp.org/and the Autism Society of America (ASA). These organization may have chapters in your area. If not, they can provide you with the names of professionals who would know someone to refer you to, in your geographical area.
• if you know parents of children with autism, ask them about the professionals in your area familiar with autism. If those professionals cannot help you, they will refer you to someone in your area familiar with AS in adults.

To find out what some adults have to say about growing up with AS, read Autism Life Skills.

My first contact with autism – 30 years ago – was at Fairview State Hospital in Orange County, California. I worked there two years, preparing young adults for de-institutionalization, teaching them self-help and community living skills using behavioral methods. I learned about discrete trials, prompting, rewarding and taking data. Little did I know years later I would be using these same techniques to teach my own son, Jeremy.

To this day I vividly remember my first contact with a young adult with autism. It was my first day at work, and I was waiting in the recreation therapy office for my boss. Gregg walked in. “Hi my name is Gregg Doe. I used to be a sports newscaster. Do you like baseball? Ask me about any World Series and I can tell you who won and what the score was.” I was thinking how dedicated this man was to leave a job in television to work at a state hospital, until I looked at my clipboard and saw his name included in the list of people I was supposed to teach. Gregg could tell you all about sports, but couldn’t tie his own shoelaces.

Fast forward to today: I know a lot more about autism, and so does the general public. Then, I would take Gregg and his peers into the community to practice crossing the street or ordering food in a restaurant, people would stare and avoid getting too close. Now, when my son – who at 20 is about the same age as most of my Fairview patients back then – is out in public, people are more accepting, even when Jeremy is not on his best behavior. People smile at us, some stop to talk and ask questions when he has his assistance dog with him. People’s attitudes towards autism – and people with autism – have changed, in a good way. Services for kids have improved. Teachers are more knowledgeable about autism.

What has not changed over the years, however, is the devastation a parent feels when hearing the diagnosis of autism for the first time. Difficult then; just as difficult now. No matter how deeply inside you realize something is wrong, suspect it might be autism, the professional pronouncement still kicks you in the stomach and sends your head reeling. Today there are many different treatments and therapies, a good thing. However, there is still no know way of knowing which therapy or biomedical treatment will be helpful to your child. Then and now: we grieve, we live amidst uncertainty, we lie awake night after night searching for answers.

When Jeremy was born in Paris in 1989, autism was still fairly rare: The estimated diagnosis rate was 1 in 10,000. It’s still painful to think back to Jeremy’s early years. It was almost impossible to get any help for him at the time. I knew he was not developing normally, and I wanted to know why. I wanted somebody to tell me what to do to help him. Most of the medical professionals  I consulted told me to take him to see a psychoanalyst – This was the treatment of choice in Paris at the time. When Jeremy finally was diagnosed, at age three, the specialist handed me a box of pencils and said, “If you are lucky, you will find a good institution for your son. He will eventually learn to package pencils into a box. That’s where these came from.” That was then. This is now: I have found an institution for my son: it’s called “college.” Jeremy is headed there after he graduates from high school in June 2010 – with a full academic diploma. He passed the California High School Exit Exam (one of the requirements), without modifications, only accommodations. He now needs to take and pass one year of algebra and one semester of science to earn his diploma.

My son’s success is not a miracle, rather the result of years of blood, sweat and tears (on his part and mine), and the hard work of many educators, home tutors, Jeremy and myself. I’m not especially talented, but I am very stubborn. I never asked the school for anything I had not first tried with Jeremy myself, experienced success and results, and had the data to prove it.

When Jeremy was 14, I took him to see Soma Mukhopadhyay, now Educational Director of HALO (Helping Autism through Learning and Outreach). I met Soma while doing research for my first book, Autism Spectrum Disorders. It was then I realized Jeremy was an auditory learner. All the years of using visual strategies, myself and educators thinking he was not “getting it,” finally made sense. Fifteen years ago visual strategies were the new kid on the block. Today a huge assumption exists in our community that all or the majority of students with autism are visual learners. It is simply not true. How many kids who “don’t get it” with visual strategies are really auditory learners, making marginal success because we’re not teaching to their learning style?

Soma started to teach Jeremy using the Rapid Prompting Method. It involved a lot of work, but slowly he began to make progress. That year I also realized how much he was “stuck” in his body. He could spell out and describe the steps needed to complete a sequence, but he could not move his body to do it without physical prompting.

Jeremy’s challenges (see sidebar) were, more often than not, a result of sensory processing issues and movement disorder. When I interviewed adults on the spectrum for my third book Autism Life Skills, I asked each what was important to them growing up. It surprised me to learn the great impact sensory processing challenges had, even on those with Asperger’s Syndrome.

My views about autism and autism treatments have changed over the years. Then, I was a die-hard behaviorist; I only used treatments scientifically proven to be effective. Now, I embrace different types of therapy as adjuncts to using behavior-based strategies (shaping, prompting, rewards, etc.). After witnessing Jeremy’s success with RPM and pointing to letters, having it validated in different ways by different educators, I believe parents should try a therapy or educational strategy that makes sense for the child and family. See if it works; there are ways of validating on an individual level.

While working with young adults at Fairview State Hospital before I had Jeremy, and even while he was little, my face scrunched up in disbelief when nonverbal people severely impacted by autism were described as “locked up” in their body, with no way of reaching us. Now I know exactly what they mean; this is Jeremy. I strongly believe there are different types of autism. I believe that for some, like my son, autism is a movement disorder. They cannot always control their movements or use their muscles (needed for speech and other important skills). Many, like my son, have problems initiating and stopping movement yet are capable of learning nonetheless.

Then and now, autism remains a multi-layered condition with no clear answers to guide parents and professionals. Then, treatment options were limited…so very limited. Now, options range from behavioral to biomedical, from sensory to social skills, and everything in between. Then, parents were told to expect the worst, to institutionalize their child, move on with the lives. Now, thankfully, we hold a brighter vision for our children’s future. Then and now: our children are gifts in our lives and our love endures. That will never change.

SIDEBAR:

By Jeremy Sicile-Kira

Jeremy tells us…

When I was little, I had no real way of knowing what was going on around me. My body would not move even when I tried. Life was just chaos with light and sound but with no meaning. Then a physical therapist helped me learn to use my body. My mom helped me make sense of what I was seeing and hearing. I had tutors my mom hired that taught me with ABA. Then I had hearing therapy and lenses to help me see. It took a lot of effort on my part and the tutors to help me learn. Then my mom found Soma and RPM. This changed my life. I did not believe I could be so kindly taught by such a tiny woman. It is still lots of work and it is still difficult when I meet new people.

Having a way to communicate only makes life livable, but I need some nice relationships, which are not easy when you are like me. I plan to continue to learn, and to tell people to never give up.

How Pvt. Joshua D. Fry was recruited – he lived in a group home and is under limited conservatorship – is beyond comprehension. However, I get enough emails from parents to know they deal with recruiters all the time. I even wrote an article about my son’s experience.

Please understand I am not anti-military (some of my closest relatives serve and I support them) or against people being enlisted who are on the spectrum and able to serve (I have friends with Asperger’s Syndrome who probably would do a fine job in the military). This story makes me wonder where the recruiters go fishing for non-autistic, supposedly neurotypical people to serve their country.

Having raised a person severely impacted by autism for 20 years, I have learned the only way to survive is to laugh at all the absurdities we parents are often subject to. So if you do not enjoy sardonic wit, I suggest you do not read the following article I wrote which was first published on www.ageofautism.com:

“The Marines are Looking for a Few Good Men”

Rarely does the war in Iraq coincide with the war on autism in my house. Yet a few months ago, the phone rang and my hands were full of crap, literally. Normally, I would have let voice mail pick up, but I was expecting a call from my daughter. I ran to the phone and picked it up with the rubber gloves I was wearing. I was in the middle of cleaning my 18-year-old autistic son’s most recent failed attempt to make it to the toilet in time. Timing is everything.

“May I please speak to Jeremy?” requested a strong male voice. This is an unusual request in my house, as my son Jeremy is nonverbal. “He can’t come to the phone right now. Who is this, please?” I asked. “Take this number down, and tell him to call Ron,” the male voice instructed. “What is this about?” I inquired. “I’m from the Marines. I’m calling all the seniors from Torrey Pines High School, and I want to tell Jeremy what we have to offer.” “Really,” I replied, “Do you offer toilet training? I’ve heard you are really good at teaching bed making, standing in line and following directions. We are still having trouble in those areas, too. When can he start and where do I bring him?”

Actually, that was the conversation going on in my head. I just laughed and told him my son was autistic, nonverbal, and couldn’t talk on the phone. When you have a son as disabled as I do, you learn to be grateful for the smallest things. Like the fact that your son will never be eligible for active duty and that he doesn’t risk the possibility of getting killed in Iraq.

A short time later, Jeremy received a letter from the Selective Service System, who obviously were still looking for a few good men. This letter informed Jeremy that since he was now 18, he was required by law to register for selective service. Included was an application to fill out listing three categories of possible exemptions. As I read the application, I thought “OK, I’ll just have to check one of these off for Jeremy and mail it out.” To my dismay, there were only three possible exemptions listed: “Females”; “Members of the Armed Forces on full-time active duty”; and “Men who are unable to register due to circumstances beyond their control, such as being hospitalized, institutionalized, or incarcerated.” 

I couldn’t believe it. My son did not fit into any of those categories. Where was I supposed to check for “Males over the age of 18 who require 24-hour care because of their disability”? Was I supposed to sign Jeremy up and send him with his own private support person if he were ever drafted?

So I decided to get creative. I drew my own box at the bottom of the list, checked it off and wrote next to it “My son is severely impacted by autism and requires 24-hour care
and help with all of his every day living skills. Please see attached documentation.” I thought that would be the end of it.

Lo and behold, a few months later, Jeremy received his legal proof of registration card from the Selective Service System. He also received a pamphlet extolling him to “DISCOVER THE CAREER YOU WERE BORN TO PURSUE,” and informing him that they had “MORE THAN 4,000 JOBS TO EXPLORE,” and my personal favorite “88% OF OUR JOBS TRAIN YOU FOR A CAREER OUTSIDE THE MILITARY.”

Now, as a an expert on transition to adulthood services for those on the autism spectrum, I started fantasizing here. According to the 2002 report published by the President’s
Commission on Excellence in Special Education (ordered by President George Bush), unemployment rates for working-age adults with disabilities have hovered at the 70% level for at least the past twelve years. The Commission found that poor implementation of federal laws and policies in effect to help disabled students transition to competitive employment or higher education was one the reasons for such a high rate of unemployment.

Well, what if we put the Selective Service System in charge of transition programs and special education services from high school on up? They seem to be good at job development and effective at implementation of federal law and policies.

I continued to read the pamphlet…. “Choosing a career is a big decision. What do you love to do? What are you good at?” Gosh, these are the same questions I ask the teens and young adults with autism in my line of work. “Join the military and find out.”

Seriously, I doubt I could ever get Jeremy to agree to join the military, even if it offered him a guaranteed career. During the 2004 presidential debate, my son sat with us in the family room, flicking a piece of string, seemingly impervious to what we were watching for two hours. Back then, my son was just learning how to use a letter-board as a means of communication and we were unsure of how much he understood of what he heard. (As shown on MTV’s True Life episode “I Have Autism,” Jeremy has recently mastered the use of a Litewriter, a piece of assistive technology that speaks out what he types).

The next day in a workshop, Jeremy was asked to demonstrate his letter-board capabilities to a group of people watching on a video monitor in a separate room.

Soma Mukhopadhyay, educational director of HALO, presented a letter-board to Jeremy and said,  “Hi Jeremy.  Nice to see you. Do you want to tell me about something you did or something you watched on TV yesterday?”

SAW ON TV, Jeremy spelled out.

“What did you watch?” asked Soma

DEBATE

“Who do you want to see win the election, Jeremy, The democrats or the republicans?”

DEMOCRATS

“Why?”

STOP THE WAR

“What happens when we stop the war?” inquired Soma.

SOLDIERS CAN COME HOME

All this just goes to show, my son may be autistic, but he definitely isn’t stupid.

“May I please speak to Jeremy?” requested a strong male voice. This is an unusual request in my house, as my son Jeremy is nonverbal. “He can’t come to the phone right now. Who is this, please?” I asked. “Take this number down, and tell him to call Ron,” the male voice instructed. “What is this about?,” I inquired. “I’m from the Marines. I’m calling all the Seniors from Torrey Pines High School, and I want to tell Jeremy what we have to offer.” “Really,” I replied, “Do you offer toilet training? I’ve heard you are really good at teaching bed making, standing in line and following directions. We are still having trouble in those areas, too. When can he start and where do I bring him?”

Actually, that was the conversation going on in my head. I just laughed and told him my son was autistic, nonverbal and couldn’t talk on the phone. When you have a son as disabled as I do, you learn to be grateful for the smallest things. Like the fact that your son will never be eligible for active duty, that he doesn’t risk the possibility of getting killed in Iraq.

A short time later, Jeremy received a letter from the Selective Service System, who obviously were still looking for a few good men. This letter informed Jeremy that since he was now 18, he was required by law to register for selective service. Included was an application to fill out listing three categories of possible exemptions. As I read the application, I thought “OK, I’ll just have to check one of these off for Jeremy and mail it out.” To my dismay, there were only three possible exemptions listed: Females; Members of the Armed Forces on full-time active duty; and Men who are unable to register due to circumstances beyond their control, such as being hospitalized, institutionalized, or incarcerated.

I couldn’t believe it. My son did not fit into any of those categories. Where was I supposed to check for “Males over the age of 18 who require 24 hour care because of their disability”? Was I supposed to sign Jeremy up and send him with his own private support person if he were ever drafted?

So I decided to get creative. I drew my own box at the bottom of the list, checked it off and wrote next to it “My son is severely impacted by autism and requires 24 hour care

and help with all of his every day living skills. Please see attached documentation.” I thought that would be the end of it.

Low and behold, a few months later, Jeremy received his legal proof of registration card from the Selective Service System. He also received a pamphlet extolling him to ‘DISCOVER THE CAREER YOU WERE BORN TO PURSUE,’ and informing him that they had ‘MORE THAN 4,000 JOBS TO EXPLORE,’ and my personal favorite ‘88% OF OUT JOBS TRAIN YOU FOR A CAREER OUTSIDE THE MILITARY.’

Now, as an expert on transition to adulthood services for those on the autism spectrum, I started fantasizing here. According to the 2002 report published by the President’s

Commission on Excellence in Special Education (ordered by President George Bush), unemployment rates for working-age adults with disabilities have hovered at the 70% level for at least the past twelve years. The Commission found that poor implementation of federal laws and policies in effect to help disabled students transition to competitive employment or higher education was one the reasons for such a high rate of unemployment. Well, what if we put the Selective Service System in charge of transition programs and special education services from high school on up? They seem to be good at job development and effective at implementation of federal law and policies.

I continued to read the pamphlet ‘Choosing a career is a big decision. What do you love to do? What are you good at?’ Gosh, these are the same questions I ask the teens and young adults with autism in my line of work. ‘Join the military and find out.’

Seriously, I doubt I could ever get Jeremy to agree to join the military, even if it offered him a guaranteed career. During the 2004 presidential debate, my son sat with us in the family room, flicking a piece of string, seemingly impervious to what we were watching for two hours. Back then, my son was just learning how to use a letter-board as a means of communication and we were unsure of how much he understood of what he heard. (As shown on MTV’s True Life episode “I Have Autism,” Jeremy has recently mastered the use of a Litewriter, a piece of assistive technology that speaks out what he types).

The next day in a workshop, Jeremy was asked to demonstrate his letter-board capabilities to a group of people watching on a video monitor in a separate room. Soma Mukhopadhyay, Educational Director of HALO, presented a letter-board to Jeremy and said “Hi Jeremy. Nice to see you. Do you want to tell me about something you did or something you watched on TV yesterday?”

SAW ON TV, Jeremy spelled out.

“What did you watch?” asked Soma

DEBATE

“Who do you want to see win the election, Jeremy, The democrats or the republicans?”

DEMOCRATS

“Why?”

STOP THE WAR

“What happens when we stop the war?” inquired Soma.

SOLDIERS CAN COME HOME

All this just goes to show, my son may be autistic, but he definitely isn’t stupid.