Social Enterprises as a solution for employment of autistic youth

| December 14, 2016

In his December 13, 2016 Forbes blog post Michael Bernick, former California labor department director gives a good overview of the employment situation for those on the autism spectrum. At Autistry we have been working on employment for our students for many years and know how difficult it is to find good solutions for them. In our experience with the different types of employment situations we conclude that Social Enterprises provide the most robust solution for the largest number of autistic individuals.

Father and son

Bernick identifies three main types of employment opportunities:

1. “Autism at Work” and other targeted hiring and retention efforts by large employers.
Companies such as Microsoft and Salesforce have initiatives to provide employment opportunities in support staff as well as staff for their primary business.

2. Autism-focused businesses.
Also known as Social Enterprises (and in the past “sheltered employment”) these would be businesses formed with the intention of providing employment opportunities.

3. Self-employment and internet-based creative collectives.
These are programs to enable individuals to start their own businesses as well as systems that support individuals marketing their own creations as a way to earn a living.

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No small business solutions – yet

Bernick makes no mention of employment at small local businesses and we think he was right to omit them. Small businesses are a large share of the employment picture and their small size can be good for autistic employees. However, we have found it nearly impossible to chisel out a spot in any local business that is both good for the individual and good (profitable) for the local business. The reality is most individuals who need services also need significant support to work. Small businesses can’t afford the required support and there are no programs that provide that kind of support over the multi-year timeframe we find is required.

Unicorns and other legends of long term employment at local businesses

Yes, we know of some people who have had jobs with local businesses, sometimes for many years. On examination these are all very special cases. There is usually continuous family support and/or the personal involvement of a key business owner. When it works, these situations are utopian. But they suffer from being exceedingly fragile. We have had many students come to us after having been ejected from an employment situation that might have been stable for years but could not weather very typical changes: Owners and family members providing support age and die. Businesses change, change owners, or fail. For every one student in a special job at a local business, I have twenty or thirty we cannot place. Without special financial incentives and robust support, we do not see local businesses being able to scale employment in numbers large enough to solve the employment challenge.

The Big Business model

Large employers like Microsoft can and do provide programs supporting employment for autistics. Within this are generally two tiers of employment. On one tier are support jobs like food services, janitorial, office supply and office management and these can be accessible to the most impaired individuals. On the next tier are jobs related to the core business function of the company. These higher level jobs are accessible only to the most talented, least impaired individuals. At Microsoft these would be jobs as programmers with additional support. Our main concern is that these initiatives can survive only as long as the business can sustain them and might be vulnerable to changes in business climate. Another issue is that for the support jobs any migration to higher level jobs within the company can be difficult or impossible.

lauren learning

Self-employment initiatives and crafts marketplaces

The idea that many or most autistic individuals can run their own business and make a living is a beautiful idea that does have any basis in reality. Just because autistics can be bossy, it does not follow that they should be bosses. Just because many might prefer to work alone, it does not follow they should be sole proprietors. Most NTs (NeuroTypicals) are not capable of running their own businesses. Most NTs spend their entire lives as employees of businesses they do not own or run. Even without the added complication of being autistic the ability to be a successful entrepreneur is rare. Individuals capable of running their own business should certainly be supported but like employment at small local businesses, we do not feel this solution scales to the number of individuals who need employment.

The best solution: Social Enterprises

Paraphrasing Churchill: Creating small businesses specifically to provide employment is not a great solution, except when compared to all the other ways that have been tried.

An example of a social enterprise that Autistry Studios could create would be a light manufacturing business making products such as small furniture items out of wood, model kits produced on machines like our laser cutters and 3D printers, and textile products sewn by student/employees. Because our goal is interesting products that provide good employment we can and will migrate through many different product ideas and types. Depending on a student/employee’s ability they could hold any one of many jobs within this manufacturing organization: product design, marketing, sales, production, customer service, … For the most capable employees these jobs can be short term jobs providing training and experience towards independent employment. For the more impaired they can spend as much time as they need growing in skills and experience until they can leave to work independently. For the most impaired this would be a stimulating and productive way for them to spend their time.

We feel Social Enterprises (SEs) are the best and most flexible solution to the employment problem for autistic youth. They can be scaled to employ large numbers of individuals and there is every indication that the number of autistics entering adulthood is growing. Social Enterprises offer support across the spectrum and create meaningful employment for all levels of ability.

Related articles on our work program experiments and experiences:
December 2013 Autistry wins grant for employment program
April 2011 Article: What’s working? Autistry Enterprises for employment

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We are parents of a child with Autism Spectrum Disorder (ASD) and professionals who chose to immerse ourselves in working with this population. We will often use “autistic” to mean either “symptoms of the diagnosis of autism” or “a person with the diagnosis of autism.” Similarly we will use ASD to mean either “Autism Spectrum Disorder” or “a diagnosis of Autism Spectrum Disorder” or “autistic.” One of the authors (Daniel) has Asperger’s Syndrome and we will often use “Aspergers” or “aspie” to refer to individuals with Asperger’s Syndrome. We often refer to our “clients” as “students” and use the terms interchangeably.

Oh yeah, Ian moved out…

| July 10, 2016

ian in truckIan always planned on moving out when he was 20. To Sausalito. To a houseboat. Or maybe a mobile home. Ian is always thinking about plans for the next step.

The summer of 2014, after Ian left high school he started reminding us it was time for him to move out. Janet and I were both “yeah, yeah, yeah, we’ll get the paperwork started.” Ian was 19.

We have worked with other families to help their children move out of the family home into some sort of more independent living situation. It can take years to find the right situation. Here in Marin County we usually work with Lifehouse Agency. For living outside the home in California there are basically three places the funding comes from: state and federal funds from Social Security Insurance funds, the Regional Center (in our case the Golden Gate Regional Center), and support from the family.

The previous summer we had thrashed out Ian’s SSI situation. Ian is a medium verbal autistic and is considered 100% disabled. Other than a pile of paperwork and some office visits, our Social Security Administration experience went well. Your mileage may vary… Anyway SSI: DONE.

Ian had been a regional center client since he was 3 years old and we had kept his status up to date. This mainly entailed a home visit each year by his case worker(s). We never received any financial assistance from GGRC when Ian was a minor but Regional Center support is crucial once your child is an adult. Anyway, the annual meetings kept his account open. Regional Center client status: DONE.

The first step for supported housing is to contact the regional center. Janet made an appointment to get the process started. She also contacted Lifehouse Agency to get Ian onto their list. A year or so earlier, Lifehouse had opened a new residence less than a mile from our home that was specifically for young adult autistics and we hoped, one day, he might be able to move in.

ian and calendarWith all the phone calls made and paperwork submitted we settled in for the long wait. Given our experience with others and the stories we had heard, we fully expected to wait for a year or more before a residence opened up. On the waiting list at Lifehouse: DONE.

Less than two weeks after contacting Lifehouse a bedroom came available at the Corte Madera House with three other autistic men. It’s in a nice neighborhood, two blocks from stores with nearby bus stops. The house has a staff person on hand to help guide housekeeping and shopping and stays overnight. Only two miles away from our house, all downhill. We can be there in minutes. No excuses, it was a perfect first placement.

We had gone through the motions to appease Ian’s growing desire for independence but Janet and I were not really ready for this.

We thought perhaps the GGRC approval would slow the process down. But they thought the placement was excellent and fast-tracked the paperwork. So, two weeks after deciding to look for an acceptable new home for Ian, we were packing his bags.

ians bedroom
Ian was enthusiastic about every step. We wanted to keep his bedroom at our house intact as a safety net. We raided Ikea for his bedroom furniture: bed, desk, chair, and dresser. He took his clothes, PC, TV set, books, and a few movies. We put together a basic set of pots and pans. Dishes and such are shared at the house.

For Janet and me, all of this was another of those “this is what we should be doing ((but I don’t know if it will work) and I’d really rather things just stay the same)” moments. We had a swirling kaleidoscope of emotions and a long list of worries. And fears. And nightmares.

Will he starve? Will he eat nothing but junk?

Will he forget to shave? Brush his teeth?

Will he hate his roommates? Will they hate him?

Will he die in his sleep? (I did not claim these were rational fears…)

Will he remember to wear clean clothes?

Will he get enough sleep?

Will he be lonely? Depressed?

Will he overdraw his bank account?

Will he get scammed by somebody?

Imagining failure modes is one of my superpowers. I can probably brainstorm another hundred worries.

Moving Ian into the house was extremely hard for Janet and me. So hard and so upsetting that this is why it has taken nearly two years to write about it and share the experience. Meeting Ian’s roommates and moving him in was one of those times it was really forced into our face: our son is disabled and his adult life will be very different from other kids his age. In our bubble at home we could fool ourselves that all was normal and we could imagine the future. Reality hurt. Still hurts.

Four autistic adult men share a house. What do you think it looks like? Depressing. Silent. Ian’s roommates are all at least ten years older.

ian wavingFor us, moving Ian still hurts and worries us – it still needs our courage to continue. But we are also positive that it was the right thing to do and that it has been good for him.

For Ian, moving out has been amazing. His confidence has grown. His functional independence has grown. He refuses to ever spend the night back home and has relented only when he was recovering from getting his wisdom teeth pulled, down with a cold, or during the holidays when his house is empty and the staff are away. We are planning more major dental work so we can see him more. Ian calls us every night before he goes to bed and he’s used Face Time to do things like have us help him find the right settings on the washing machine.

animal houseWe see Ian nearly every day at Autistry. Ian continues to attend College of Marin and as the second anniversary in his first house comes up he is starting to think about what the next house will be.

He keeps reminding us that “Animal House” is still what he thinks is ideal housing while attending college.

Ian goes to college part 4: Math and English classes

| June 22, 2016

Earlier posts:

Ian goes to college – The plan for his education (November 17, 2014)

Ian goes to college part 2 – His first day (August 26, 2014)

Ian goes to college part 3 – Drama Class Results (February 6, 2015)

We went in to this whole “Ian will take classes at the local junior college” with no idea how or if this would work. Ian is a medium verbal autistic and did not complete a high school diploma.

Would the college accept us inserting an aide into the situation?

Would Ian be able to do the work? Ian had spent all of his public education in Special Education programs where the level of challenge was low.

We knew we should try – we really had no idea if it would work.

We have been amazed, relieved, and inspired by how well it has all turned out. Ian has established a solid start on his college education. For Ian’s second and third semesters he took introductory math classes at College of Marin (hereafter COM): Math 085 (Arithmetic Skills) and Math 095 (Basic/Intermediate Math Skills). We had an aide attend with Ian for the first week or so and after that Ian attended independently. Ian has earned B’s and B-minuses.

In the most recent semester (Spring 2016) Ian is taking a remedial English ENGL 062 (Developmental Reading/Writing) for six units.

With Ian attending independently the main issue becomes whether Ian has understood assignments correctly and is he keeping up with all the work. In his math classes this was not an issue because math classes tend to have one thread of work building upward. However, English classes are squarely in the heart of his disability and he has often slightly misunderstood assignments. The complexity of college English classes is also much higher.

Ian at bus stop

Above is Ian waiting to catch the bus home from school. It’s great how we can use Google Street View to check up on him.

We checked in with Ian almost every day on his homework. Over time Ian has become self-motivated on working on his assignments. On the math classes we would help with studying for the final exams and help Ian with which topics to focus on.

This semester’s English class has gone better than we ever hoped. The work is focused on writing, vocabulary, and reading. It is just at the edge of Ian’s ability. Ian is medium-verbal and we were worried whether Ian would be able to keep up. We are thrilled that Ian is making progress on this subject and Ian’s reading comprehension and writing ability are improving.

Ian did mostly well while Sara was away on her maternity leave but Ian did get a little off track. Ian missed some assignments given verbally in class and the web page for the class had not been updated. We ramped up making sure Ian knew about all assignments and the teacher was flexible about letting Ian turn in the missing assignments late.

The class was extremely challenging for Ian but he earned a B in lecture and an A in the lab and has achieved a solid 3.10 overall GPA.

Another win: during our semester meeting with Ian’s academic counselor to plan his next semester the counselor urged us to consider skipping a GED and instead have Ian work directly on earning an AA degree. Ian was happy about this plan. The GED has always felt like a step backwards but a college degree feels like progress to everyone.

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What has worked. Some of these are “duh” but we have found all of these things important:

One class at a time. We feel the focus on one class at a time has been key to Ian’s success. In the English class there are reading assignments, writing assignments, and vocabulary/spelling assignments all with different start and due dates. It has been at the edge of Ian’s organizational skills to manage this and he has made some mistakes. If there was a second class’s assignments he was also juggling, we feel it would be too much for him.

Maintain good communication with the professor and the school. College of Marin has been incredibly supportive and has been flexible about allowing our aides to be in the room when needed. We helped Ian maintain contact with his professors by email and attending office hours.

Attend EVERY class meeting. If the student attends EVERY class meeting it really helps! Amazing. This sounds easy but we know from working with others that just attending can be a challenge.

Work (a bit) on homework nearly every day. Only one class – easy, right? All of these classes caused Ian to need to look at fundamental material so the total workload was pretty high. After we established the daily homework routine, Ian began to own it and do his homework on his own.

Ian goes to college part 3 – Drama Class Results

| February 6, 2015

As he begins his second semester of community college, I want to catch everyone up on Ian’s college career to date. Last semester, Ian and I attended College of Marin’s beginning acting class. While we originally discussed transitioning towards independence last semester, we never made the jump. Drama 130 was a great class and a hard class. Ian wanted to give up at times, but he was willing to push through and rise to the challenges. Many times he told me: “This is too hard!” I would respond by telling him, “It’s really hard, but not too hard.” ‘Too hard’ means that you can’t do it, and Ian was doing it.

Ian and SaraThere were parts of Ian’s drama class that he navigated with ease. He was an ace at the warm up exercises and improvisation games. He attended to these tasks with his full focus and with little to no support from me. These tasks demanded attention to multiple variables, observation of social cues, creative thinking, and coordination of movement and vocalization. Each of these elements represents an area of challenge for individuals on the autism spectrum.

Many of the classroom exercises required a combination of these skills, multiplying the difficulty. As an example, the exercise “Red Ball/Blue Ball,” entails the class standing in a circle and passing an imaginary ball. First, the students are asked to visualize a large red beach ball. Students “pass” the imaginary ball by making eye contact with someone in the circle, saying the words “red ball” and miming the throw. The recipient “catches” the ball in accordance with its size and weight and then passes it on to someone else. The group works up to passing four different “balls” of different weight, size and shape. The attention and communication required for this game is incredibly challenging and Ian’s ability to master this activity blew me away. Ian also exhibited a high level of independence when the class was split into pairs to work on exercises and scenes. At first, I stayed near during these exercises, but by the end of the semester, I usually sat in the classroom as he and a classmate walked out into the halls to find a place to work.

On to the areas where Ian needed continued support: By far the hardest part of the class for Ian to independently benefit from was lecture. It is my belief that Ian fell into a pattern of behaving, but not paying attention in high school and possibly before then. It is a pattern of behavior that has been highly functional for him. He understands the expectations of him to remain seated and quiet while the teacher is speaking, but the volume of verbal information, especially when it ranges out of his interest and/or comprehension, does not hold his attention.

Seriously IanFrom his facial expressions and gaze, I imagine him to be running a series of visual movie-like memories from his past, some funny and some distressing. I imagine the teacher’s voice turning into the trombone “wah wah” from the Peanuts. Sometimes a random word or phrase such as “ninja” or “Robin Williams” would catch his attention and he would raise his hand and ask a non-sequitur question. While Ian thrived when paired with a peer, he experienced similar attention difficulties when doing small group work. As with the teacher, his peers’ voices seemed to fade into the background as he entered his private world.

To address these issues, Ian and I created a 5-point scale. Ian found my Incredible 5-point Scale workbook a few months earlier. He was fascinated by it and felt sure that it would be helpful to him. At the time, we used it to make a scale to help him with appropriate greetings. Ian was very actively engaged with creating a scale for classroom engagement/attention levels.

Here’s what we came up with:

Ians 5-point scale

Using this scale, and pointing to the person Ian should be paying attention to, helped him to increase his level of engagement and attention when and where appropriate. We also created a system for Ian to ask for breaks to walk in the hallway and enter his private world. My main goal with this intervention was to increase Ian’s awareness of when he was paying attention and when he was “zoning out”, so that he was in control of the shift instead of passively drifting into the world of his imagination. We also created an excitement scale to remind Ian to use his techniques, such as deep breaths when he was becoming over-stimulated. With the excitement scale, I could make eye contact from across the room and hold up 4 fingers; Ian would then close his eyes, take a deep breath, and ground himself. Doing this minimized the need to walk across the room to him during activities and gave him more responsibility for self-regulation.

IMG_3477Another area in which Ian made excellent progress with support was with the written requirements for the class. The students were asked to write two performance critiques of actors from College of Marin’s plays, and two character analysis papers for the monologues they performed as midterm and final exams. The first part of supporting these assignments was helping to focus Ian’s attention. For both plays, Ian’s teacher helped me chose a character for Ian to pay special attention to. We chose characters with dramatic shifts and personalities. I attended the first play with Ian and Janet attended the second. We drew his attention to the actor he would be writing about as we were watching the play and discussed them immediately following the play. For the character analysis, I focused Ian’s attention by having him highlight dialogue. Together, we created an outline for the papers with prompt sentences. I would then leave Ian to work independently and then circle back in to help. It was a lot of work and a big challenge for Ian, but he stretched to meet the challenge. He showed remarkable diligence and determination and, with support, produced college level writing.

In the end, Ian’s first go at a college class was a success. He needed some support throughout the class, but he also demonstrated the ability to independently tackle some college-level work. He came out of the class with an A and, perhaps more importantly, his monologue performance (the class final) received roaring applause from his classmates, whom he had inevitably charmed and connected with over the course of the semester.

Addendum:

For Ian’s final monologue, he chose a piece from Hunting and Gathering: a comedy about finding your place, by Brooke Berman. In the monologue Ian performed, Astor, (a man in his 20’s), complains in colorful language about the difficulties of finding housing in New York, and about how mothers worry because it is their biologically determined function. (A bit of foreshadowing here…) I will write again soon about Ian’s amazing (and surprising) launch into the spring semester.

Ian and the Disney Effect

| January 12, 2015

This week I attended The Disney Effect: Communicating with Autistic Children through Animation, an event hosted by the Disney Family Museum in San Francisco. Expecting the usual “parent of an autistic” author talk and autism expert lecture, I was totally unprepared for the emotional impact of Ron Suskind’s story. I had read the New York Times article and purchased the book Life, Animated so I knew going in that he would speak about the connection he made with his son through the world of Disney films. What I did not expect was just how closely his experience mirrored my own and how deeply that would affect me. After the presentation I was invited to a very small ten-person lunch meeting and, seated between Ron Suskind and his wife Cornelia, we shared stories and they were very excited about the common experiences and what we are doing at Autistry.

Ian and PoohI have often spoken and have written elsewhere about the moment I truly entered the world of my son, Ian. When Ian was very young (2 to 4 years old) he had very little language. However, he could recite entire Disney movies word-for-word – especially Winnie the Pooh. During that period he also did not sleep at night, so my husband, who had to get up early for work, slept in Ian’s racecar-bed and Ian snuggled up with me. One night when Ian was happily reciting lines from The Blustery Day, I jumped in and took the part of Tigger: “The wonderful thing about tiggers, is tiggers are wonderful things. Their tops are made out of rubber. Their bottoms are made out of springs!” Ian whipped his head around, looked me right in the eye…and then burst into laughter. With a huge smile he welcomed me into his world.

Ron Suskind’s experience with his son Owen was similar. Owen had been nonverbal for years until one day Ron spoke to him in the voice of Iago (the parrot in Aladdin), and Owen responded in the voice and with the words of the parrot’s master, Jafar. That moment changed their lives. Ron and his wife, Cornelia, dove into Owen’s world and together, using the characters and themes of Disney movies, helped Owen learn to read and communicate with his community.

Ian_with_Thomas_setLike the Suskind’s, Dan and I embraced Ian’s world. A significant challenge for us came when Ian discovered the world of Thomas the Tank Engine. Ian knew every train, every person, and every word of every dialogue. We bought him the train table and all the trains we could find. When we brought everything home and set it up, Ian was so excited he didn’t eat for three days (OK, a day and a half, but it felt like FOREVER). We became concerned and reached out for advice to therapists, behaviorists, and friends. We were told NOT to indulge this OBSESSION. We were told to put the trains away and make Ian focus on other things – age appropriate things like riding a bicycle or climbing a tree. But we looked at the joy on our son’s face, the rapture as he played out scenes from the TV series on his own Thomas track. He was not only talking, he was acting out interactions between characters. He was telling stories. Now when he went to bed, he would line up the Thomas trains on his night stand carefully so that the trains were facing each other. So they could talk to each other. So what if he wasn’t eating. So what if this looked like an obsession. My son was communicating. We have never regretted this decision. Soon he was talking more and his over-obsessive behaviors also diminished.

Ian reads to animalsAnother shared experience was that just like the Suskind’s, we turned on the closed captions on everything on television so that Ian could read the lines that Thomas and his friends were saying. This helped Ian understand that reading was really talking. He is very good at reading aloud even when he doesn’t understand the text. Ian has developed a deep connection to storytelling. He would often create a circle with his stuffed animals and read to them. He even set up a library so that his animals could check out their own books. All this at a time when his ability to communicate verbally was still very, very low.

IanAtTheLibraryBy entering and embracing our son’s world, we allowed him to teach us other styles of communication. Connecting his imagination to the real world and to other people in his life has created a bridge between his world and ours. We use many of these techniques working with other students and families in our program at Autistry. We hope that together we can build more bridges so other families can cross over as well.

Ian goes to college – The plan for his education

| November 17, 2014

Ian is continuing to do well attending his class at College of Marin which Sara wrote about previously. As Ian’s first semester ends Sara will write again to relate how things went and what we all learned. In this installment I want to discuss what our motivations and ideas are as we work forward with Ian.

Ian is a medium-verbal autistic and did not achieve a high school diploma. We had choices while Ian was moving through the public school system. Over time we found that it really boiled down to two paths: education or socialization. In pure special education settings (separate classes from the mainstream student body), Ian’s education was maximized. In full inclusion settings, Ian’s social skills progressed but his significant verbal deficits meant that he did not learn much of the curriculum.

This either/or choice is a consequence of Ian’s need for focus to make progress. We have found this to be true in general for other people we work with. In our experience autistics(*) do not do well when trying to learn simultaneously on several different threads. While Neuro Typical (NTs) teenagers might be able to learn Math, History, English, a foreign language, Science, and age-appropriate social behavior all at the same time, we almost always find that people with ASD need to focus on fewer topics of learning to make good progress. Ian’s verbal impairment is significant and he needs to focus on just a few activities to make satisfactory progress.

Since middle school we had unsuccessfully argued with the schools that Ian needed to be able to focus on fewer topics. It was very frustrating for us when Ian’s middle school special education teacher tried our suggestion for a couple weeks, reported great progress but because he did not have administrative support to continue he immediately returned to the same multi-topic approach we all knew did not work as well.

Picture 013 In any case, we knew Ian needed focus. As Ian approached eighth grade we started looking at choices for high school. Ian had been with a large cohort of regular ed neighborhood students since fourth grade. They knew Ian, liked him and looked out for him. Almost all of these students were going to be moving to Redwood High School across the street from the middle school. However, our high school district has concentrated their services for autistics and other special education programs at Drake High School further away and with an almost totally new group of students.

Picture 046 Ian wanted to go to Redwood with his cohort. The District wanted Ian to go to the other school. This presented us with a difficult but clear choice. With all the special education resources at Drake, Ian would have one-on-one support and classes modified to his level. At Redwood, Ian would have no one-on-one support and only a slightly modified classroom experience. The district’s choice would be better for Ian’s education. Ian’s choice would be better for his social skills and learning independence.

The final piece was when Janet and I asked ourselves: will Ian’s education be done at the end of his senior year, or will he need more education after high school? Ian’s language difficulties meant that if Ian was going to get a high school diploma it was going to be a very hard four years. We have worked with other students who struggled hard to get the diploma and most refused to do any more education afterwards as they were tired of the hard grind.

grad2 We made the choice that Ian’s education was going to be a long haul. We realized that our goal for high school was that Ian acquire the skills to be able to continue his education after high school. That meant enjoying school enough to want to continue. Ian attended Redwood high nearby and left in 2014 with a certificate of completion.

 

 

 

399 Frankly, Ian is not fully on board with the plan that he attend community college part time and work part time, possibly for many years. The near term goal is a GED and possibly attending a four-year college afterwards. When asked, Ian’s idea of college and his living situation is based on the movie “Animal House.” He sees himself living with a group of young people having fun.

Besides starting college this semester, Ian moved out to a house nearby with three other autistic young men last month. We’ll write about THAT soon.

* As a parent of a child with Autism Spectrum Disorder (ASD) and as someone who has chosen to immerse myself in this work I will often use “autistic” to mean either “symptoms of the diagnosis of autism” or “a person with the diagnosis of autism.” Similarly I will use ASD to mean either “Autism Spectrum Disorder” or “a diagnosis of Autism Spectrum Disorder.” I have Asperger’s Syndrome and I will often use “aspie” to refer to individuals with Asperger’s Syndrome.

Ian goes to college part 2 – His first day

| August 26, 2014

Ian4-8-12Ian is bravely trying out a college class at College of Marin. While it is not a community college in San Francisco complete with dorms, (one of Ian’s current dreams), it is a huge step towards the independent adult life that he is trying to build for himself and that his parents are working to support with all of their hearts. In true Dan and Janet fashion, when they looked at the current programs to support students with disabilities at the local community college and found them lacking, they set out to build something better.  

002Thus I am attending the class with Ian, not only to support him as a student, but to investigate the nature of supporting ASD (Autism Spectrum Disorder) individuals at the college level. In addition to thinking about balancing Ian’s needs with those of his teacher and classmates, I am going to be doing my best to think about how this support could be scaled up to meet the needs of other ASD students.

Ian with HarpOne of the joys and challenges of working with ASD individuals is the incredible diversity of their skills, talents and needs. During our first day of class, I noticed that Ian’s tendency is to tune out the intense verbal language of the lecture component of the class. While doing this, he is still working hard to stay regulated and to present an outward impression of paying attention. He is quiet and still at his desk and looks toward the teacher as she talks. Asking him questions, prompting him to write down essential concepts and reminding him to pay attention were strategies I tried to increase his level of attendance to the material being presented. I am helped in these efforts by the nature of the class, a drama class which teaches fundamental acting skills. As such, the class is taught by a woman who has a background in acting and who conducts her class in an engaging manor. High levels of affect naturally interest Ian, and prompt him to attend to the material. Another helpful element of the class is that the students tend to only spend small chunks of time on lecture material before being called to their feet and asked to put principles into active practice.

IanJoyDuring the circle exercises of the first day, passing names and gestures around a circle, first methodically and then in a random pattern, Ian displayed a very high level of engagement. He not only “got” the games, he was good at them. Over the course of these exercises, I saw the students’ perception of Ian change. Their attitude shifted from one of curiosity to one of interest, and he was chosen often by his peers to participate. He was good at remembering the names of his peers and who had or had not been already chosen. It was gratifying to see Ian engaging and succeeding. Our only interaction during this period was when he would catch my eye from across the room and I would give him a smile or thumbs-up. This first day showed me three different levels of engagement and motivation that Ian currently possesses. There was a language-based lecture that he needed a high level of support to gain benefit from, a short film sequence and some short monologue performances that Ian watched intently and was able to comment on with very little scaffolding/prompting, and there were the active exercises, which he was able to attend to and participate in without support.

Ian and SaraThe drama exercises can be viewed as intense focused social interactions that follow distinct sets of rules. With these rules in place, Ian was able to have prolonged interactions with his peers, both one-on-one and as a group. This component of the class is important, challenging, and highly motivating for Ian. He is a member of an ensemble. He is having to stretch himself to fulfill his obligation to the ensemble, and some of his peers may be having to stretch their perception of disability in order to fulfill their obligations to him. I find this to be incredibly healthy stretching for all parties.

 

Embryonic Steps – part 1

| February 20, 2014

[This is the first in a series of blog posts on the history, development, and methodology of Autistry by Dan Swearingen and Janet Lawson]

We are often asked why we started Autistry Studios. The answer in a word: Ian.

Image71Our son is autistic and his autism has driven much that we have done and learned. Ian was born early in 1995 while we were living in Bloomington, Indiana. Dan was a Ph.D. candidate at Indiana University studying Astrophysics. Janet was a librarian at the local public library and was working on her Masters degree in Library and Information Science at IU. Towards the end of the pregnancy Janet’s blood pressure started to increase and she was diagnosed with preeclampsia. As her due date approached her doctors worked to induce a normal delivery. After nearly two weeks Janet’s condition deteriorated to eclampsia and Ian was delivered by emergency c-section. Ian was full term and a very healthy baby at birth.

Image44But as the months passed he began to miss the usual milestones of speech development. We had one of those “What to Expect…” books and noted with increasing worry and dread each “normal” milestone he missed. He did not babble in a speech-like way in the early months. He was not drawn to noise-making toys nor did he imitate different speech sounds. He seemed totally mystified by games of Peek-a-Boo. But he always smiled. He made eye contact. And he loved to be held. Ian seemed to communicate without words. And though we thought his utter fascination with cupboard door hinges, the pliability of a sheet of paper, or the concentric ripples in a dog’s water dish was a bit eccentric we simply chalked it up to being the son of a scientist. We took comfort in the stories that Einstein didn’t speak until he was 3 years old. Even though Ian never measured up to the What to Expect timelines he nevertheless developed into an attractive, engaging and affectionate child.

Image91For financial reasons Dan quit school before finishing his Ph.D. but found that his programming skills were in very high demand back where we grew up in the San Francisco Bay Area. We moved the family to Marin County in 1997. Ian was two and a half. We did not know any pediatricians in the area so Janet somewhat randomly chose the first one found in the health insurance providers list. This doctor happened to specialize in developmental pediatrics and their first appointment, a simple well-baby checkup, stretched into nearly three hours and ended with the doctor solemnly stating: “I think we need to consider the possibility that your son is autistic.”

Image47The news brought both agony and a sense of relief. We knew little about autism and that which we did know was frightening. Janet had read a few books on autism as they passed across the checkout station at the library. But those books contained stories of children living in a bubble world, uninterested and seemingly unaffected by the people around them. Ian was always aware of other people. Though at parks he did prefer to study the tires of parked cars rather than play with the other children in the sandbox. So when the doctor diagnosed autism we immediately had a vision of a child forever lost to us. But there was also a part of us, deep down that knew Ian was different. Having the doctor validate these feelings with a word – autism, actually gave us a certain peace. But, it also set us on a path to learn whatever we could, about autism and about our very unique little boy.

tunnelSoon after Ian’s third birthday we made an appointment with Dr. Bryna Siegel. Dr Siegel was, at that time, the director of UC San Francisco Autism and Neurodevelopment Program. We had had the preliminary diagnosis from our local pediatrician but, like most parents, we wanted a second opinion. After several hours of testing, Dr Siegel came back with a diagnosis of autism. Along with her reputation for being a fine clinician and an expert in autism, Dr. Siegel is known for her direct and even blunt presentations to parents. She lived up to that reputation in our meeting. She said that Ian was definitely autistic and that she did not consider him to be in the upper 20% of autistic individuals who would live independently. She gave the example of Temple Grandin only to say that Ian did not seem to be like her.

IanMommyShe considered Ian to be a “low-functioning autistic”. The worst diagnosis they give. Dan remembers that the only literature he could find was that people with that diagnosis had an 80% probability of being institutionalized as adults. At that time there was very little literature to look at and none was particularly encouraging. UCSF had a list of many things they wanted Ian to do with them but we quickly saw that all they were interested in was studying Ian, not treating him. The lack of guidance as to what we should do was very upsetting to us.

But Dr Siegel also said that it was difficult to tell how a three-year old would develop and that a lot rested on how well he could learn. And she remarked on Ian’s charming temperament and his engaging personality. “He is very attractive and that will help him enormously at school. Teachers are going to love him.” And they did.

When it became obvious that caring for an autistic child was a full time endeavor, Janet gave up trying to hold down high-powered, high-paying tech or film industry jobs and concentrated on creating a quiet, nourishing environment for Ian. As parents of autistic children know only too well this was a round-the-clock job.

DSC0001611Ian, like most young children, loved Winnie the Pooh. When he first began to talk he would stay up all night reciting long passages from the Disney movies. His lilting sing-song voice was not a good lullaby so Janet was up all night with him. So she too memorized the Winnie-the-Pooh dialogue. One night as Ian recited the well worn lines Janet took the part of Tigger – “The wonderful thing about tiggers, is tiggers are wonderful things…” Ian whipped his head around, looked her right in the eye…and then burst into laughter. She had entered his world. That was the first night he fell asleep before 3am. Janet had found a way to connect with him in that very special world of his imagination.

Years later, when she became a therapist this became her primary method – to enter the world of her clients, join with them in their inner dialogues, and support them as they enlarged their worlds to include others.

The Threat of a Cure

As the parents of a newly diagnosed autistic child we entered a world where it felt like every week brought a new Thing We Could Do to Cure Our Child. Music! Horses! Computer games! No computer games! Magnets! We looked into all of them. Everyone we knew sent us literature they had found. “Have you tried….?” There was constant guilt that we were not doing enough. Constant frustration when the weekly “cure” turned out to work on ONE child in the entire world. And then friends would keep sending us information about that same cure for the next month. We came to call this: living with the threat of a cure (that you did not take advantage of!).

DSC000071Some things helped and we are thankful for them. Going to a gluten free-dairy free diet did help us tremendously. The diet made it possible for Ian to sleep through the night without meds and that was the year he learned to read because he was actually able to attend to lessons. We tended to shy away from the programs which required working Ian huge hours. We stuck with things where he would work hard and then have sufficient time to play on his own and with others. We found that consistency was the best antidote for anxiety. We tried never to be late picking him up from school or appointments. We made our lives as regular as possible –eating meals at the same time every day, going to bed and getting up at the same time, and keeping over-stimulating events to a minimum. Our world became smaller. Friends and family found us boring. But Ian stayed relatively calm and happy.

Ian playing baseballIn Ian’s schooling we generally received good service by collaborating with the districts as best we could. We tried wherever possible to provide extra help and materials to support the classroom teachers. And we mostly managed without huge legal battles – that is not to say that there were never heated negotiations. But the outcome was always agreed to be in Ian’s best interest. Ian is currently a senior in high school and will graduate with a certificate of completion with the same group of kids he has been with since fourth grade.

Ian was born with autism but he was also born with a charming and engaging personality. It has been our job as his parents to protect that lovely person as we also help him understand and accept his autism.

Ian at the River2

Personal Ownership/Parents Transition

| February 10, 2014

ConnorSo I have not written in this blog for some time and I apologize. My intent was to do this more regularly but perhaps monthly is a better goal.

A parent forwarded another great transition blog written by Laura Shumaker. What was of interest is that she has a son who is now 20 and comments on the same things. There is a lot of focus on early intervention. We need to create the opportunities for our young adults. This means that we must seek out employers, internships and volunteer opportunities. We must create a stronger circle of resources for our young adults.

The topics are very similar because as we transition our kids we are all consumed with the same concerns. I often say if I could live forever I would not be as worried about my son’s future. I would not care if he lived at home but that is not the case. My focus is getting him employed and into a supported living situation. He is 21 years old this year but our goal continues to be to transition him gradually and by age 25. He is the one that told us 25 and we are trying to follow his lead while gently guiding him.

ConnorConnor has been attending a county program since finishing up high school. This is a program that stresses very little academics and has a lot of down time. We decided to have Connor attend as he needed a place where he would be engaged and around others his age. There was also a very structured transportation element that would facilitate independence in taking the bus. We had only hoped to have Connor attend for a year as we worked to figure out other post high school options. He is now in his second year and really thriving. What has happened is Connor has taken complete ownership for this program. He knows on what days he needs to bring lunch and makes his own without any involvement from us. On the days he goes to Safeway he checks with his dad about what he should purchase. Connor will also buy things that he needs like mouthwash or toothpaste. He monitors this on his own. He gets ready in the morning on his own and is always ready when the taxi arrives. We in fact do not need to be home. He is also taking the bus on his own. He is given money at the beginning of the week and has to budget for the week to cover lunches, bus fare and trips to Safeway. I share this as sometimes as parents we walk away from some programs without considering the long term impact. I have actually never visited this class when in session as I knew I would be looking for something else. Connor is almost 21 and he needs to make his own choices and also be responsible for his activities. We have really stepped back and we are the ones who are also transitioning.

Connor cutting plywoodConnor has 3 different part time jobs/internships including the Autistry Model Employment Program. He works hard at these jobs and we are hopeful that this will be a foundation for future employment as he has acquired great skills and understands better the work environment. We await word from the Department of Rehabilitation as we hope to transfer Connor to paying jobs. I will blog about that journey. We still have not accessed GGRC but will be soon.

* For more information on Transition and to meet other community leaders, service providers, and parents join us at the Marin Autism Collaborative Annual Meeting, Saturday, March 8th, 9am – Noon at Marin Office of Education, 1111 Las Galinas Ave, San Rafael. There will also be a panel of young adults with autism speaking about their transition and work place experiences.

Help others see my strengths/ Time Magazine

| October 23, 2013

I just finished reading the article in Time Magazine “What’s Right with the Autistic Mind”.  I really appreciated this article which supports the need to focus in on strengths rather than deficits.  I encourage others to read this article and share with friends as it does offer insight into a different way of thinking. My brother who is a scientist  and has a doctorate in bio physics (and is not on the spectrum) once commented that  curing autism was not the right approach as the mind of a person with autism is often times a gift into a different way to think and solve problems. He said this understanding that his nephew needed intense intervention. My brother had an amazing connection to Connor and was able to understand how he processed information so could elicit pretty profound thinking from him.

Connor in hard hatThe entire educational experience for parents as well as children with special needs is usually discussing what they are unable to do rather than recognizing the strengths and building on those. In a true transition plan this is exactly what should be done; build on skills to assist with employment options or other post high school experiences. My younger son asked me why I work so hard on keeping Connor engaged and I told him because we need to teach him how to exist in this world. I also explained that the best approach is to integrate his way of thinking and adapt this to our world in order for him to someday be independent. We also need to do our best at educating others so they can appreciate his strengths and those of many adults on the spectrum.   My son asked me many other questions and I later learned that he was writing an essay titled, How to live with my Brother.  He asked me to read the paper and my initial impression was that this was not truly Connor but an exaggeration to have more of an impact on the reader.  I then thought about this more and concluded that most of what he had described was really pretty accurate but yet not how I saw Connor. My younger son knows his brother well and they are very close and I respected his perspective.  This got me thinking about how others saw my son and what I could do to better represent his skills and strengths. This is not just true of my son but all these young adolescents. What can we do so others can appreciate them for who they are and what skills they are able to contribute?  

looking downAs part a member of the Alternative Programming Advisory Committee at Tamalpais Union High District we discussed the essentials for student success. Here are some of the characteristics that were discussed and I am interested to hear if there are others that we may have missed that relate to our students: ability to advocate, emotional intelligence, basic /core academic skills, critical thinking skills, personal financial management, personal expression/creativity, teamwork, ability to see own potential, self-confidence, ability to assess impact actions have on yourself and others, ownership to learning.

I have contacted several different people to see if they are willing to help me create a support network for internships.  More to follow…