About a year ago, this book arrived on my doorstep and although I was intrigued by the title, I wondered why I was being sent a book about economy by my publisher.  I was busy writing 41 Things to Know About Autism so I put it aside. Today, heading out the door to catch a plane for a speaking engagement in Grand Junction, Colorado, I grabbed it to read on the plane. I thought it would be nice to read something different from my usual repast of autism books.

Create Your Own Economy: The Path to Prosperity in a Disordered World, is a misleading title because this book doesn’t seem to have much to do with economy but does talk a lot about how as individuals we organize information these days and how this relates to autism in the writer’s mind. Tyler Crowen, a behavioral economist, writes about how people with autism organize and manipulate information, how our consumption of information is changing, and how the way we organize these information bites are reminiscent of autistic thinking. A very interesting read, Tyler has many positive things to say about autism and how it should  be discussed not as a disability, but rather as an ability and an asset to society. Although I agree in principle, I only have to think about how much help my son needs at 21 due to his autism and how much it is costing the state and the family for him to live due to his need for 24 hour supports. That’s the reality of his economy – and mine – at the moment.

That being said, I agree with much of what Crowen has to say, and it would be nice if society had more his viewpoint when looking at some of the ‘quirkiness’ or ‘obsessions’ of those on the spectrum. Crowen became interested in autism when a reader of his blog wrote  telling him he sounded like he had a lot of Aspie or autistic traits. So Crowen began to read about autism. He states at the beginning of the book,  “As I read more, I began to see that the autistic mind-set about engaging with information is a powerful way to understand the whole world around us. Especially now.”

Read it for a fresh look at autism, and how the way we use and analyze information now is more like our loved ones on the spectrum.

Jeremy graduated from high school with a GPA of 3.75 on June 18, 2010.
He auditioned for, and was chosen to give  a commencement speech.

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Back in August, I wrote this post for my Autism and Adolescence column in the Examiner.com, and I’m re-posting it here because I’ve received a few emails with questions recently from general education teachers. Maybe there are others who could use these little nuggets of information.

Often junior high and high school teachers have teenagers with Asperger’s Syndrome included in their classrooms, and are not given much in the way of useful information. This column will provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.  For more information, check out this webpage.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant.  A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

• It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to stay focused.
• The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”
• This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.
• Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.
• Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to  arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Auditory Integration Training / Photo Rebecca Sicile-Kira

In my last Psychology Today post I discussed sensory processing disorder, and received  comments and  questions from readers.  I had mentioned an article  in The Boston Globe that  mentioned that  a  group of  professionals and parents  was  lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders. Reader Dr. Joshua Feder wrote in to give us the link where people can provide input:  “Remember, the public commenting on the upcoming DSM-V is still in process and the addition of SPDs is in flux, so if you think it is important you can make your voice heard. Go to http://www.spdfoundation.net/dsmv.html to learn more!”

Sensory processing challenges is a hot topic at autism conferences  and this provides me the opportunity of asking adults on the autism spectrum  what we could do to make the sensory aspects of life easier for them, as well as children who may be unable to discuss what they are sensing. I have written up the answers in my book, 41 Things To Know About Autism, and I am mentioning some of them here.

It was no surprise for me  to get answers such as   “Ban leaf blowers,” or “Don’t rev your Harley near me,” and “Add more water fountains to public places.”   The sound of water  can be soothing to many and can mask some of the painful sounds of the city.   There are different methods and treatments that  have helped many who have  sensory processing difficulties. However, there is not that much clinical research on all the diffferent treatments and therapies, so you need to choose widely what makes sense for your particular situation. The information here is not to be considered as medical advice; I am just explaining what others have said  reported as helpful for their situation.  Remember that what works for one person, may not for another.

There are ways to help people who have sensitivities to light and sound. The cheapest and most immediate solutions include:

• Wearing a baseball cap or hat with a brim and sunglasses, can help with keeping bright lights out of the eyes in brightly lit environments.
• Headphones with music or white noise can cancel out noisy environment.
• Desensitization is a way to get a person de-sensitized or used to certain environments, for example  an overly-lit store, by going in a few minutes the first time and then increasing the time spent in that environment.

Some treatments that have helped individuals include:

• Biomedical Interventions in the form of diets and supplements: Donna Williams, author of nine books on autism, credits diets tailored to her specific allergies, as well as supplements, as having helped her overcome many of sensory issues.
• Auditory Integration Therapies: Individuals wear headphones and listen to modulated sounds and music, with certain frequencies filtered out. There are different methods, one developed by Dr. Guy Berard, another by Dr. Alfred Tomatis. Other types of listening programs include The Listening Program and Samonas Auditory Intervention.
• Vision therapy:  This therapy, which can consist of a combination of exercises and lenses, can be effective to help process incoming information for someone whose vision processing is not working correctly.
• Occupational Therapy: The aim of OT is to help a person meet goals in areas of everyday life that are important to them. OT’s canhelp with propioceptive and vestibular challenges as well.
• Sensory Integration Therapy: This specialty area of OT is carried out by occupational therapists specifically trained in this method. The term sensory integration refers to the way the brain organizes sensations and input received to then engage in the environment.
• Sensory diet: Often an OT will prescribe a sensory diet of activities to be repeated numerous times a day at regular intervals to help the child stay regulated. As a child gets older, he can learn some activities he can do to help himself. The child then learns self-regulation techniques as he gets older.

This post was published on PsychologyToday.com on March 14, 2010.

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.

Getting a diagnosis – if indeed a child has an autism spectrum disorder (ASD) – as early as possible is important because research shows that early intervention is the best intervention. Yet, not all pediatricians recognize the early signs of a possible ASD.

Although diagnosis rates of autism are up, this does not mean that all doctors or medical professionals are aware of the different signs of autism in different types of babies and toddlers. A diagnosis is made by observing the behavioral characteristics in three areas : communication, social interactions, and imaginative play or thought. As there are no physical characteristics that are shared by those in the spectrum, and there is a wide range of abilities and disabilities – it is not always easy to identify.

The difficulty is that right now, there is no medical test that can be given to tell if a person has autism or not. Not all children with autism develop in the same way. For example, my son as a child, never reached his developmental milestones, had to have physical therapy to learn how to sit up on his own, crawl and walk. By age two, he only had two words. He would spin the same toy over and over if left to his own devices. He never reached out towards other children when in group situations. Another child I know who also has the label of autism hit all his developmental milestones as a baby, but never slept through the night, and had chronic diarrhea. Around 18 months he began to stop speaking, he began to line up toys over and over and no longer initiated social interaction with his parents or siblings . As a toddler, he was very active and had a hard time staying still for any amount of time.

Often it is the mom who has a concern, because her baby boy is not going through the developmental milestones at the usual pace, and so she will discuss it with the pediatrician. If the pediatrician is not very knowledgeable about autism, he may tell mom to wait a few months and come back, saying that boys don’t always develop as quickly as girls.
What ASD’s looks like at the different ages and different places on the spectrum is variable. Thus, choosing the right professional is important. For example, a baby may go through all the developmental milestones, but at around age 8 or 9 there may be concerns about how he is relating to other children his own age, or he may start having problems with the organizational aspects of the homework when projects over time are given has homework. This child may have Asperger’s Syndrome, which looks different than your typical classic autism (non-verbal, no social skills at all) which is apparent much earlier.

In the past many children, teens and adults with Asperger’s Syndrome (AS) were mis-diagnosed as having mental illnesses or learning disabilities, thus impeding there access to the information and strategies that would be most helpful to them. It is important when getting assessments for a child or teen for possible diagnosis of Asperger’s that the professional (usually a psychologist) observe the person in different environments as well as assess in an office. This is because a person with AS may very well recite the correct answers to questions of what to do in specific situations, but when it comes to the reality, they have not internalized the information to be able to apply it to themselves.
My advice : follow your instincts. If you are the parent, you know your baby or child best because you spend the most time with him or her. If you think there is something wrong, there probably is. The important thing is to find the right person who can tell you if your baby, child, or teen has an ASD. Remember, in all that you do, you are not alone. There are many people in your situation, looking for answers. Take the first step and see a professional who can help you.
If you are a parent wondering whether or not your baby is reaching his developmental milestones, there is a list of them on the First Signs website: http://www.firstsigns.org/healthydev/milestones.htm

Keep in mind that some children have regressive type autism – they develop in the usual way and then lose skills previously learned. Also, this checklist does not include the gastrointestinal challenges that many babies suffer from, so keep those in mind as well.

To find a professional familiar with autism diagnosis in your geographical area, contact other parents who have gone through the diagnostic process in your area. You can find them by contacting local autism organizations in your area:

Autism Society of America (ASA) – You can find a chapter by going to this page on their website:
http://www.autism-society.org/site/PageServer?pagename=community_chapters

Talk About Curing Autism Now (TACA): http://meetup.tacanow.org/

National Autism Association: http://www.nationalautismassociation.org/localchapter.php

If you think your baby or child has an ASD, it is important to seek the advice of a professional who is knowledgeable about the behavioral symptoms as well as the diagnostic criteria – and the sooner, the better.

For Emily Gerson Saines, Executive Producer, this movie has been a labor of love for nne years. A parent of a child diagnosed at three, she was given Temple’s autobiography, “Thinking in Pictures,” by her own mother. The book became a source of inspiration for her in raising her own child.

Temple is well-known for her ability of thinking in pictures, and I was therefore curious as to how she would react to seeing her life in images created by others, not necessarily the same pictures she has in her mind about her life. Temple discussed her thoughts with me about the movie.

How much input did Temple have on the making of this movie?

“I gave input into the screenwriting, spent a good amount of time, four days, with the writers and two days with the director. I think they did a great job. They built a cattle dipping vat based right on my original, off of my drawings. My drawings are all over the movie; I really liked that. In a scene near the end of the movie, I am selling a job to one of the meat plants, my drawings are out on the conference room table. Well, not my originals, I copied them at Kinko’s! They did really cool animations of the conveyor system for handling cattle at the slaughter plant from those drawings – really cool animations taken form my drawings – they really emphasized my projects. The cattle stuff was very accurate. They showed all the sexual discrimination I had to put up with in the livestock field. Women did not work in the yards back then just the office. It’s a lot better now.”

What was it like for Temple to see Claire Danes playing her?

“Weird. It was weird to see me on the screen. It was like going in a weird time machine, going back in a time machine into the 60’s. They put a wig on Claire and dressed her up in clothes and she had to wear these ugly false teeth apparatus. She looked like me, except she was shorter than me and we couldn’t do anything about that, but she sounds and moves just like me. She does accurately portray how I would act in the 60s and 70s. Claire did a great job.”

How did Temple help Claire prepare for the role?

“We met in New York for a half a day and I gave her all my tapes of me, of old lectures from the late 80’s, early 90’s and an old Larry King show I did. I only had still photos from childhood; they didn’t take video in our house then. Claire had a voice and movement coach.

Did the film attempt to portray how Temple’s mind thinks in pictures; and if so how did they do that?

“The movie is great. They really showed how my mind works. They have a neat scene where they show how I think in pictures, very effective. I love how they showed that. They showed sequentially pictures of ‘shoes’ that is exactly how I think – like snapshots of different types of shoes: high heels, flats, all different types and shapes and colors.”

What was Temple’s favorite aspect of the movie?

“The visualizations and they way they used my drawings. They showed the optical illusion I built, the science teacher challenged me to do that, the Amesʼ “Distorted Room. They built a working squeeze machine I designed and the gate at my aunt’s ranch.”

What was it life for Temple being on the movie set, watching them put her life story into pictures?

“I only watched a small part of it being filmed. I watched it through a monitor because I didn’t want to make Claire nervous. What really interested me was the number of people on the set that had Asperger’s Syndrome. Smart people. Let’s just say they weren’t sweeping the floor. They are all part timers. There are a lot of technical jobs in production and it was like a big construction project.”

What message does Temple want people to take away from seeing this movie?

“I hope one of the things they get from it is the importance of a good teacher and mentors. Mr. Carlock (David Strathairn) saw that I had some areas of strength and he developed that. He spotted my ability with science; mentors are attracted to ability. Sometimes you find the mentors in the oddest places. In fact, the first meat plant I ever went to, I got in because I met the wife of their insurance agent, because she liked my hand embroidered shirt.

People are going to hire you because of your skill not your personality. You need to have a portfolio to show them what you can do. When I first went into the American Society of Agricultural Engineers, they thought I was weird, they didn’t even want to talk to me. Then I whipped out the cow dip vat drawing and that made them respect me.

Also, it’s important for people with Asperger’s to understand they need to make things that people want in order to make a living. Like the opening gate at my aunt’s farm – I would get upset at my aunt, but I ended up building the gate my aunt (Catherine O’Hara) wanted. I figured out how to open the gate without getting out of the car. This gate – it solved other’s people’s problems. That’s something you can make money from. The gate was an early project at age 16 before I made the squeeze machine. I hope this movie inspires a lot of parents.”

What is it like for Temple to know that there is a movie of her life out there?

“Well, I’ll never get a fat head. I’ll go on the movie tour, and go on my book tours, and then I’ll come back here. I never forget what my real job is, which is my livestock stuff. Today, I’m having lunch with one of my students to discuss a project we are working on together. That’s my real job.”

A few days after talking to Temple about the movie, I was given the opportunity to see it. I have to agree with Temple. It’s a great movie and not just for people interested in autism or cattle, because It’s a wonderful, inspirational, and entertaining story. The messages that Temple hopes people will take away are true for everyone, not just those with Asperger’s, especially in this economy. As a friend of Temple’s I was impressed with Claire’s interpretation of her: she really sounds and moves like Temple. As a former production professional, I appreciated the effort and care with which they took words on a page and translated them into sounds and images that accurately portrayed a person who is a hero to many of us – not an easy thing to do. As a parent of a child with autism, I could not help but relate to Temple’s mother, Eustacia Cutler (Julia Ormond), and was moved to tears during the final scene. Watch this movie, you’ll be glad you did.

This article was first published on HuffingtonPost.com, January 13, 2010.

“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money.  These last two ideas are very important to Jeremy.”

- Allan Gustafson, Interview with Jeremy Sicile-Kira, Transition Year 07-08

Like all parents, my husband and I worry  about our son, Jeremy, and what his future will look like. Jeremy is now 20 years old, and with  the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s  life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student  on the spectrum, there are a few  aspects that need to be focused on:  the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available.

Necessary Life Skills

In my latest book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether  at school, at home, or in the community. Some of the skills  such as self-regulation, independence, social relationships,  and self-advocacy are  important  for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job  is really a culmination of  all the life skills  hopefully learned during the school –age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, they must be able to control their emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to  a colleague is important to know in most work situations. Self advocacy skills are  necessary in order to request what you need to get the job done.

Life skills in general  should be broken down and translated into IEP goals and objectives, especially during middle school, high school and  transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often,  when  looking for a job placement for  a person on the spectrum, people take the approach of asking for handout, or a favor. We need to  approach this differently. I took a look at the top 10 skills and attributes most employers  look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people  on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s  the top ten of what  employers look for: honesty and  integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably  focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually  the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?”  They are not the employee who will be caught with his hand in the cash till.  That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend.  Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed  information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service,  they market the positive attributes,  not the negatives. And that’s precisely what we need to be doing with any prospective employees on the spectrum.

The Child’s Interests and Strengths

It is extremely important to consider what your child or student likes or is passionate (ie obsessed) about and figure out how that can help him earn money. In most cases, people on the spectrum can be difficult to motivate – unless it involves something they are really into. For some, it is quite obvious what they are particularly interested in because they don’t let you forget. The trick is to figure out how to use that interest and turn it into a moneymaker, or to find a career field that can use that particular interest or talent. That’s where mentors come into play (more about that later).

For most on the spectrum, a job will be their one connection to the community, and their main activity. If a neurotypical hates his job, he usually has another aspect of his life that is bringing him pleasure – his family, his church, athletic activities. However, most on the spectrum do not have family or friends or many outside groups they belong to, so it is important to help them find work that will fulfill them in some way.

There are those for whom it is fairly obvious what they are passionate about. For many like my son, Jeremy, it is a much less obvious. There doesn’t seem to be anything he is particularly obsessed about  that could lead to employment.  He used to love to spin tops (physics researcher?), and to follow the patterns in carpets and floor tiles (carpet checker in a rug factory?), now he is mostly focused on communicating about girls with his support people (beauty contest judge?). However, by having different people work with him or observe him in different environments, we have been able to come up with ideas to try out, and jobs  to avoid.

When thinking about Jeremy’s future money- making potential (either in a job, customized employment, or self-employment), we thought about the different strengths and weaknesses Jeremy had.  The questions we asked ourselves  are the same that most people should consider when helping someone on the spectrum who is considering employment. For example, we asked:

• What is Jeremy usually drawn to?
• Is there a particular  subject area or skill area that  Jeremy excels in?
• What, if left to his own devices, does he like to do most?
• What motivates Jeremy to do what he does?
• How successful is Jeremy at  self-regulating? Does he need to work in a place with low sensory stimulation?
• What kind of situations cause Jeremy to feel anxious?
• What do Jeremy’s organizational or multitasking skills look like?
• Does Jeremy do better in crowded environments or when there are fewer people around?
• Does  Jeremy like moving around, or staying in the same place?
• How many hours a week of work can Jeremy handle? Will he be ok with a 40 hour a week job, or does he need a part time job?
• Does Jeremy like routine and the stability of  doing the same thing every day, or does he like change?

Jeremy is interested in the concept of self-employment and did well in two self-employment experiences he tried in high school.  He had a lot more control over his environment and what his daily tasks consisted of then he would have had in a regular employment situation. However, if he were to apply for a job, there are  many questions he would need to ask an prospective employer (or someone would have to ask for him)  during the interview process to ensure a good fit between himself and the job as well as the work environment.

The Importance of Mentors

Mentors can help figure out how to turn an interest into a job, or  into a means to earn money. Temple Grandin (Thinking in Pictures; Developing Talents) speaks often about the importance of mentors in helping to turn interests into marketable skills.  That is what helped her become the success she is today.  Temple had mentors  from her science teacher at school to her aunt, from family friends to colleagues who were crucial to her success. If your child appears to have skills or  a real interest in a specific area,  someone  who works in that field   can help  the child  realize the application of his interests.  Parents may realize their child’s talent, but not know all about a certain employment area.

For example,   a child may enjoy spending hours on the computer, but  his parent who is a taxi driver or a school teacher or an attorney, may  not know anything aobut the field of computers and employment possibilities. Someone who works in computers – perhaps a tech guy the family knows-  can give insight to what is  applicable  to someone with  that child’s talents.

Mentors can also help a student feel valued as  that person will be interested in the same topic he is and will enjoy hearing what the child has to say, whereas family members  may be tired of hearing about a topic they have no interest in.

Different Employment Structures

There are different employment structures currently available and by analyzing a person’s strengths and weaknesses, likes and dislikes, and by asking some of the questions above,  a clearer idea of what could be a good match with the person on the spectrum is possible. There is full-time work, part-time employment, seasonal work, year round employment and so on.

Other less traditional structures  are becoming more popular, and this is probably in response to the realization that most adults with disabilities are unemployed. In 2002,  unemployment figures for disabled adults hovered at 70% and had done so for the previous 12 years (2002 Report by the President’s Commission on Excellence in Special Education).   This report showed us that besides needing to do a better job of preparing our students for employment, meant we also had to start looking at other employment structures more conducive to individual employee needs.

One  less traditional structure  is customized employment, which  means that the work is tailored to the individual, not the other way around. It can mean job carving, where one job is carved up into different tasks  and shared by several people, giving each employee the part of the job they enjoy or excel at the most. Another type of customized employment is self-employment, which is sometimes referred to as micro-enterprise and  which basically means having your own business or being self-employed.  This can be a good  option for those who are having a difficult time fitting into  regular paid positions, or when there is no position available. This option is gaining popularity in the US as well as in the UK.  For some examples of self-employment initiatives by people with developmental disabilities,  visit http://www.incomelinks.biz/projects.htm.

Self Employment as an Option

Although I would encourage Jeremy to try  an employment opportunity that seems like a good fit, I am not holding my breath waiting for that job to show up on the horizon. I am not convinced that that much has changed since 2002 in the job market in regards to hiring disabled people, and certainly with all the neurotypicals now jobless, I don’t anticipate a huge rush of employers looking to hire my son.

I became interested in the concept of self-employment or micro-enterprise  when Jeremy was not offered any  work experiences during his first few years of high school, about 5 years ago. The workability person at the time felt that Jeremy was not ready for any of  the job options she had in the community.  His teacher, however, felt everyone, including Jeremy, had potential, and was open to creating a self-employment experience under workability. At that time, Jeremy could not communicate as readily as he can now, and so we had to  come up with ideas based on observations that people who knew  Jeremy made about his strengths and weaknesses, his likes and dislikes, and then ask him yes or no questions.

I had heard of people with developmental disabilities having their own business.  When the opportunity came, I  attended a workshop on the process and how it could work, and it made sense to me for someone like Jeremy.  It was clear that if workability was telling me there was not   a work experience opportunity for  Jeremy, I was going to have to create something for him  to learn “on the job” skills.

Jeremy’s teacher came up with the idea of starting a sandwich delivery service for the teachers, based on Jeremy’s strengths and likes, and the fact that by the end of the week, the teachers were sick of the on-site lunch option, and so there was a need for such a service.  Jeremy’s second experience was providing  a needed product (selling flowers to peers at school where no flowers were available on campus). By actually doing these businesses, Jeremy learned valuable business lessons.  These lessons were complimented by general education classes he took those semesters, such as a class on marketing and another one on economics. For his class projects he had to write papers on how he applied those principles to his job. Some of these lessons were:  the cost of doing business; the difference between a profit and a loss;  how marketing, location and  price affected the numbers of customers he was able to attract and keep. Jeremy also learned that if  he could not do all aspects of his job,  he had to pay someone else to do the parts he could not. In reality, it is these kinds of business lessons all neurotypical teens should be learning in the current economy.

That being said, self-employment is not for everyone and necessitates a business support team. The business support team can be made up of a teacher or parent, a paraprofessional, a mentor , a friend, someone who has business experience. Each person brings their knowledge to the team.   The business team helps to advise in areas the person needs help with, and also does parts of the business the person cannot, just as in all businesses (ie I pay a tech guy to take care of my website because I can’t). There are free resources, available on-line for those who are not experienced in starting up a business.

Looking at   self employment as an option sometimes leads to an actual job. The process of discovering a person’s strengths and weaknesses, can lead to discovering  areas of traditional employment that  had not been   considered for that person previously. Sometimes it leads to a job offer  from a business in the local community that  the person had visited  to  get more  information about his area of interest.

Conclusion

Teaching children and teens on the spectrum needed life skills is a necessary  preparation to  life as a money-earning adult. Analyzing the needs of both the potential employee and employer, as well as looking at the different options in employment structures is necessary to ensuring a good match. Finding a mentor can help with a successful  transition to gainful employment.

This year, Jeremy is benefiting from two workability experiences while he is studying to earn his high school diploma. Twice a week he works at the local library (which he has visited on a regular basis for the last 10 years). Once a week he helps develop the business and marketing plans for the micro-enterprise experience that some of the other students are working on through workability. Jeremy  has come a long way thanks to all the different team members along the way who believed in his potential. It takes a village….

This article first appeared in The Autism File February 2009 issue.

Autism: It’s a Family Thing

It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006).  Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.

Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard  not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).