The Autistry Studios Mission

Helping ASD youth become independent adults.

At Autistry Studios we help teens and adults with Autism, Asperger's and other learning differences become successfully independent by leveraging their interests and talents while creating a community.

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Autistry Newsletter March 15, 2017

Posted By on March 15, 2017

It’s March and the madness at Autistry is all about projects and preparing for the return of the much loved Autistry Scientists & Artists Party. For more details and to purchase tickets (buying tickets online in advance helps us plan the food and drink!) go to: AutistrySAparty.brownpapertickets.com

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Building stuff. Why do we do projects at Autistry? Because they’re fun and they’re cool. YES. But they are also amazing teaching tools. The process of creating a project involves more than one particular skill. It requires planning, experimentation, execution, and a great degree of self-regulation as things rarely turn out as initially envisioned. Here are just a few of the many types of projects we do at Autistry.

Woodworking: Over the years the students have created some amazing projects using the large array of power and hand tools at the studio. We often joke that Autistics with Power Tools should be our motto. But there is far more to working with wood than attacking a piece of lumber with a skill saw. Plans need to be drawn, materials purchased, and there is the continual need to measure and remeasure. When students first come to Autistry most cannot use a ruler. But they soon learn that a mis-measured board can ruin a dollhouse!

woodworking

Model Building: We often use model kits as “B” projects, the thing you do while glue is drying on your “A” project or the 3D printer is slowly spewing out your masterpiece. Students have built tanks, airplanes, and cars and this seemingly simple activity is actually filled with learning opportunities. Putting together a kit requires reading, understanding, and following directions. And, in the case of the very popular remote control kits, models can also help with fine and gross motor skills. Not to mention learning how to drive.

models

Filmmaking: One of our golden rules at Autistry (right behind THE FINGERS NEVER LEAVE THE HANDS) is NO STORYBOARD/NO CAMERA. A Hollywood director once told me that actual filming is like cutting sausage – the real work is making the sausage. So, before the first shot is taken our students write a treatment and create a storyboard. This not only exercises executive functioning skills (planning, organization, prioritizing, etc.) but the storyboard serves as a roadmap and a means of communicating your fabulous ideas with others. Because filmmaking is a team sport.

filmmaking

Sewing: This is a sadly overlooked art form and a very practical skill. Creating a quilt, piece of clothing, or the cover for a sword requires all the steps used in woodworking, model building, and filmmaking. The project begins with an idea that needs to be developed into a workable plan. Materials need to be purchased. Skills need to be learned. And, as is true for all projects, adjustments need to be made. Resiliency and problem-solving are key when creating any project and every experienced sewer knows how to use the seam-ripper.

sewing

These are just four types of projects. We also build computers, write computer programs, make dioramas, use the 3D printers to make our own cameras, cook yummy food, and create boardgames. The possibilities are endless as are the creative ideas flowing from our students.

Autistry Newsletter – December 26, 2016

Posted By on December 26, 2016

CLICK here for the March 2017 Newsletter!

In this strange lull between the Xmas holiday and New Year’s Day, we usually drift in nostalgia and reminisce about the past year’s activities and achievements. And though there have been many wonderful accomplishments this year, we find ourselves looking forward to 2017. We are ready to roll up our sleeves and take Autistry to the next level – opening the Autistry Comprehensive Adult Program, launching creative social enterprises, and creating a Mentor Training Program for professionals and families.

KBLX CaresLast week, Dan, Steven, and Janet were interviewed by radio host Sterling James for her KBLX Cares program. We were very impressed with Steven who insisted he was not articulate enough to be on the radio – and yet he spoke with eloquence and confidence. Steven graduated last year from Sonoma State University with a degree in Applied Mathematics. He is bright, funny, creative, and autistic. Listen for yourself!

In November, we wrote about the Saturday and Sunday Core Workshops. These workshops are for teenagers and are held on the weekend to not interfere with middle and high school schedules. The Thursday and Friday Core Workshops are for adults. Our adult students range in age from 19 to 50+. Their verbal ability ranges from virtually nonverbal to oh-my-God-please-be-quiet! How do we accommodate such a wide range of interests and abilities? By addressing each individual’s needs and connecting with each individual’s interests. We challenge our students to expand their capabilities and we challenge ourselves to be open to learning new skills with our students.

coral reefThe range of projects is a reflection of the range of interests. Danielle is creating mixed media pieces. She has learned to use the laser cutter to create complex shapes and she also incorporated her love of double spiral lanyards. The lanyards became a coral reef and the perfect environment for a clown fish.

 

ComicLIfeSeveral of our students are expanding their storytelling ability with ComicLife. This simple-to-use software program allows them to create visual narratives and add short descriptions and dialogue.

Creating comics gives those with limited verbal ability the opportunity to share their stories. It also encourages the development of vocabulary, perspective-taking, and organization. Over time these stories become more and more complex and lead to stop-motion animation.

nat and allieStop-motion is a wonderful way to experience drama. The process can be tedious but the rewards are great. Over the years students have created several films incorporating stop-motion elements or entirely done as stop-motion pieces: Screaming Eggs, Ian and Reed Juggle a Star, Fish Hook, Thomas the Tank Engine (test), and Alphabet Mission to Mars!

We currently have a GoFundMe campaign raising funds to upgrade our animation tools: www.GoFundMe.com/autistry

006Some of our students are already fine writers. On Friday, Gabrielle Haggett-Molina facilitates the Autistry World group. The Autistry World Group is the creation of Sara Gardner, LMFT our Clinical Director. She felt that the inner-worlds of our students needed an outlet and peer support. Each member of this group is creating a unique imaginary world. Their projects can be novels, board games, video games, graphic novels, or even blogs. They share their works-in-progress with each other in group and also online throughout the week.

Several of our adult students are taking college courses and we will be expanding our college support services in 2017. One of the most important lessons we have learned over these last 8.5 years is that everyone, autistics included, when given the opportunity will continue to grow and learn throughout their lives. At Autistry we are firm believers in lifelong learning.

Father and Son2Our adult students (and our teens!) need employment experience. We are reaching out to the community to find appropriate opportunities but we also realize the need for creating those opportunities. Dan recently posted a blog about social enterprises and how they can offer hands-on experience to autistic individuals. In 2017 we will launch a couple of light-manufacturing social enterprises. These will offer experience designing, building, and marketing products to the public.

Wow – there is a lot of work ahead
. Please consider a donation to help us fulfill our goals and enrich and empower the autistic community. More information is available on our Donation page.

We look forward to connecting with you all in 2017!

-Janet, Dan, Sara, Allison, Gabrielle, Matt, Nghi, Bryant, and James

Social Enterprises as a solution for employment of autistic youth

Posted By on 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.

Autistry Newsletter – November #2: Sunday

Posted By on November 25, 2016

Sunday LARP3
PokemonGo TeamSundays are special at Autistry. The workshop combines older teenagers, generally juniors or seniors in high school, with some of our college age students (Friday guys). When not studying for their college classes, the older students help the others with their projects and often join in LARP (Live Action Role Play) sword fights. They are also active members of the Autistry Sunday Pokemon Go pack.

When we started Autistry we focused on these transition years – late high school age to mid-20 year olds. This is a difficult time for anyone, on the spectrum or off the spectrum. These are years of self-discovery and exploration but also years filled with fear and self-doubt. How to be independent in a world where expectations are unclear, relationships are hopelessly nuanced, and everyone else seems to know what they want and where to get it. Autistic youth often feel left behind.

celebrate
The needs of our Sunday Workshop students are driving the design of the soon to launch Autistry Comprehensive Adult Program (APAC).

For years we have offered a College Support Workshop, helped high school students with science projects, prepared students for the driving permit test, and celebrated birthdays, graduations, new jobs, and all sorts of special moments.

APAC will extend that support to include physical fitness, vocation, and life skills training. So, thank you Sunday guys for your inspiration!

A sneak peek at some of the Sunday Workshop projects:

Chris diorama in processChris is creating a diorama world for the awesome clay Solid Snake figure he made last month. The scene is a location from the Metal Gear Solid games called Shadow Moses Island. Chris has just built the mountains using cardboard strips draped with red rosin paper and painted with white glue. The final steps will be to cover the surface with Clay Shay, paint, and add details.

portal gunAvery will also create a diorama of a stage he designed for the video game Portal. He began this project by making a clay replica of the Portal gun. It is just 2” long but Avery has captured the look and feel…and the details. Avery’s diorama skills were honed making the amazing Gates of Mordor. The Gates took nearly a year to complete but Avery learned several cool model-making techniques and he stayed focused. The payoff was a spectacular diorama.

Avery's Gates of Modor with photoshopped background.

Avery’s Gates of Modor with photoshopped background.

Sash does his homeworkSasha is using his project time to get help with his school homework. We have all been impressed by his determination and his persistence.

With Matt as his mentor/tutor, Sasha spends hours working on geometry and history. But there is always time for LARP swordplay and Pokemon Go.

 

V and Sara
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Vee-Liam just completed Phase One of the Autistry Core Workshop program – 6 weeks of 1:1 work with Sara as his mentor. Together they created a wonderfully whimsical stop-motion video, Monkey and Banana.

Vee-Liam created his character and set pieces in the 2D CAD/CAM program, PartWorks and then sent the files to the laser cutter.

The scene was shot on the multi-plane camera set-up and edited in Adobe Premiere Pro. Lots of learning, lots of fun.

 

Next week we will feature the students and projects of the Thursday Autistry Core Workshop.

Gears2Please help us continue the Core Workshops and launch the Autistry Comprehensive Adult Program with a donation to our 2016 Gear-End Fundraiser. Follow the link to download, print, and send the donation form. Be sure to include the text for your custom engraved gear! You can also donate online through our Donations Page.

Thank you,
Janet, Dan, Sara, Allie, Gabrielle, Matt, Nghi, Bryant, and James

November 12, 2016 – Newsletter

Posted By on November 12, 2016

As we move into the last months of 2016, I’d like to give you all an in-depth, inside look at the Autistry Core Workshops. In 2017, we will launch the Autistry Comprehensive Adult Program (ACAP) which will expand our services to include Education, Vocation, Life Skills, and Physical Fitness/Healthy Living. But everything we do, our philosophy, our approach, our interventions, is based on knowledge we have gained in nearly a decade of Autistry Core Workshops.

SaturdayWe call our approach, Project-Based Therapy. By tapping into the individual interests of our students and providing them the tools, both physical and emotional, to create projects embracing those interests, we give them the opportunity to find their passion and build strong, resilient, and unique identities.

This will be the first of four newsletters each featuring a current workshop day at Autistry – the students and their projects. Our workshops are composed of students of similar age and with similar communication abilities. We do not use the terms Low or High Functioning. We think more in terms of communicative ability. One of the lessons we have learned over the years is the absolute need to continuously increase vocabulary and to expand all forms of literacy – informational, cultural, visual, digital, technological, etc. We are firm advocates of lifelong learning fueled by the Maker Spirit.

Saturday Core Workshop

Many of our students begin on Saturdays in the early teen groups. Their projects reflect the exuberance and curiosity of these high-energy years!

Matilda stageIt took a year of Saturdays for Nat to complete his stop-motion film, Alphabet Mission to Mars. All that patience is now paying off – the film was recently accepted into the Bluenose-Ability Film Festival in Nova Scotia and was featured at the Special Affects Film Festival last summer. Following his love for film and theater, Nat is now finishing a replica (exact reproduction, of course!) of the stage set from Matilda, the Musical. Driven by his passion, and with help from his mentor Allie, Nat found the inner strength and maturity to overcome technical obstacles to create a fabulous diorama.

mike on CADMichael began to tinker with the Lego MindStorm set and found that, with a little effort and guidance from his mentor Bryant, he had the fine motor skills and the attention to detail needed to create robots! After several successful robot-building exercises Michael is now concentrating on learning the CAD skills necessary to run the ShopBot, a robotic router. He is working on a wall clock based on the Pokemon character, Aegislash.

s SonicCreating character clocks is a great way to leverage a special interest in order to learn new skills. Nick’s Sonic Clock is a super example. Using the sophisticated graphic design software, Nick created the files that control the ShopBot router, instructing it to cut or engrave the piece of wood that became Sonic. These are not easy tools to use and require patience, concentration, and decoding ability to master. Nick, with his mentor Matt, works on these essential skills while also expanding his verbal ability with a session of focused reading in each workshop.

Alex drivesAlex brought his passion for remote-controlled vehicles to Autistry and life around here has never been the same! His enthusiasm inspired several other students and together they have built a fleet of RC cars and trucks. One of Alex’s career goals is to drive a truck so we set up a driving simulator with a long-haul truck-driving program so he can practice his skills. Model-building is a great way to incorporate executive skill-building into a fun project. It requires planning, initiation, sequencing, and organization as well as self-regulation. And when all these skills come together the result is high self-esteem and well-earned pride – and a very cool GhostBusters Car!

ghostbusters

pix-eIt is well known that Lauren loves the ShopBot but she also loves the Raspberry Pi and the 3D printer. Her latest project, after the blue RC car and the M51 Super Sherman tank, is a Pix-E camera. This project is the perfect combination of Lauren’s loves. The Pix-E Camera “is a fully customizable 3D printed camera that takes short gifs using a Raspberry Pi Zero and Raspberry Pi Camera.” Lauren is having fun … and so is Dan!

tank

vicTank Girls! Yep, they’re a thing and Victoria is one of the best. She has finished two tank models – an M3 Stuart and an M4 Sherman. Both were complicated kits requiring hours of concentration and delicate fine motor skills. With mentor Nghi cheering her on, Victoria was victorious. And last week, she completed a small motorized car model entirely on her own. She has also mastered the fine art of RC car driving, keeping Alex and Lauren on their guard.

 

GabisGabi just recently joined the Saturday workshops, and like all students, she begins with a 9-week period of intensive 1:1 guidance. This high level of attention allows us to learn more about the student’s abilities and challenges. It also provides the time to develop trust and relationship with the staff. The goal is to build a strong foundation from which to move forward. Growth and change can be stressful and trust is essential. For her first project, Gabi is working closely with Gabrielle sewing a stuffed animal toy. Gabrielle will walk her through all the aspects of the project. For her next project, Gabi will make a small patchwork quilt and practice independently the many skills she was introduced to in the stuffed toy project.

Next week we will feature the students and projects of the Sunday Autistry Core Workshop.

Gears2Please help us continue the Core Workshops and launch the Autistry Comprehensive Adult Program with a donation to our 2016 Gear-End Fundraiser. Follow the link to download, print, and send the donation form. Be sure to include the text for your custom engraved gear! You can also donate online through our Donations Page.

Thank you,
Janet, Dan, Sara, Allie, Gabrielle, Matt, Nghi, Bryant, and James

Seven Going On Three

Posted By on September 13, 2016

The Prolonged Developmental Phases of an Autistic Child

*This is a paper I wrote in 2001 when my now adult son was nearing his seventh birthday. It was written for a graduate psychology class, Phases of Human Development. I found it in a box as I was going through old papers and realized that 15 years later I am still watching my son create his identity and I still believe that language is key to his development.*

7 goiing on 3At first glance my son, Ian appears to be like any other seven-year-old. He has a lithe and agile body, clear gray eyes, and a wide infectious grin. He walks boldly across a balance beam, swings high on the schoolyard swings and screams with delight as he slides down the slide. But when one stops to study him it is soon apparent that Ian is not a typical seven-year old. He does not join in the games with other children. He does not respond to conversational or social cues the way one would expect. He does not venture out into the playground without a designated adult as an anchor. And, when alarmed, he responds with the intensity and total physical reflex of a trapped feral animal. Ian is autistic.

No one knows what makes Ian autistic. It may be a damaged neural pathway in the brain. It could be a chemical imbalance causing receptive and expressive language aphasia. It could be a central nervous system dysfunction. We may never know the exact cause of his condition but it is clear that the effects of this condition, lack of language and social skills have had a profound effect on Ian’s personal development.

Before we discuss what Ian lacks let’s look at who Ian is. Ian entered this world with his arms outstretched and a victorious gleam in his eye. Thomas Verny (1988) contends that a child’s prenatal experience, what he feels and perceives in the womb, “begins shaping his attitudes and expectations about himself” (p. 12) He also argues that the mothers attitude toward her pregnancy influences the in utero experience. If he is correct that may explain why Ian is such a joyous, sensuous, and confident child.

The nine months that I carried Ian were the happiest months of my life. I was 38 years old, healthy and living in a very supportive environment. My husband was in grad school and several of our friends were starting families. It was perhaps the only time that I had no doubt about what I was doing or what my purpose in live was. I worked in a local library and took classes toward my masters’ degree in library and information science. I gained fifty pounds and loved every ounce. My world was shaped and defined by my pregnancy.

I spent hours rubbing my tummy and talking to my son (the amniocentesis had shown that he was a boy). Verny states that at five months the fetus is “as sensitive to touch as any one-year-old”. (p. 37) This may be the reason that Ian is such a sensuous person. Unlike many autistics who find touch to be over stimulating, Ian is calmed by human contact. Rubbing his back will relax him when he is stressed and when he is upset he will ask for a hug. Verny cites studies that indicate that fetuses actually learn in the womb. It may be that by responding to Ian’s prenatal movements with rubbing motions he learned that touch can be a calming agent.

Just bornAt the very end of my pregnancy I developed serious high blood pressure and pre-eclampsia. I was hospitalized and all my bodily functions and Ian’s were carefully monitored. The condition worsened and I had an acute seizure during labor. What had been a very peaceful pregnancy became an extremely stressful and dramatic birth. With the onset of the seizure I was rushed into an operating room and Ian was delivered by emergency C-section. In discussing the work of Dr. Sontag, Verny describes the affect of maternal stress on a child as “heightening a child’s biological susceptibility to emotional distress.” (p. 54) This may explain Ian’s extreme physical response when alarmed. The best description of his behavior in these situations is that he ‘goes feral’. His eyes widen, his body tenses and, if cornered, he will lash out. Could this be a learned response from a time when the situation was dire and he was truly trapped?

After that dramatic entry into the world Ian’s first year proceeded fairly normally. His growth and physical progress closely followed the normal developmental charts and he met most of the developmental milestones during that first year. (Mussen 1979) He rolled over at three months, began to crawl at seven months and took his first steps at nine months. Though he made cooing sounds, he was not very vocal. Studies have shown that American infants vocalize 25% of the time (Mussen) whereas Ian made noises no more than 10% of the time.

Baby Ian with DadHis first few weeks of life he was most comfortable when wrapped tightly in a receiving blanket – a swaddling trick that I had been taught at the hospital. When securely wrapped he would be calm. In times of “alert inactivity” (Mahler 1975) Ian was more interested in inanimate objects then he was in people. For Ian, people were like great pillows made for snuggling. He rarely engaged in peek-a-boo games nor did he respond to children’s rhyming games. But when on the floor with his toys and stuffed animals he would coo and study them intently.

The first clear developmental milestone missed was the smile. Typically, an infant will smile at 2-4 months of age. Margaret Mahler (1975) argues that this social smile is in response to the mother’s face and signals the beginning of the symbiotic phase. Though Ian did not smile it was around this time that he began to reach up and gently stroke my cheek while I nursed him. That reaching out could have been an indication that he had begun “to dimly perceive need satisfaction as coming from some need-satisfying part-object” (p.48) and thus had taken the first step along the road to individuation.

Baby Ian 1Mahler suggests that the smile response may be influenced by the “holding behavior” of the mother. She cites several cases where the mother’s less than optimal mothering techniques have prevented the infant from smiling. These mothers may have indeed been immature or narcissistic as Mahler states but they may also have had non-smiling babies – babies who were perhaps expressing themselves in other ways.

When Ian was eight months old, in the midst of what Mahler calls the First Subphase – Differentiation, we painted one wall of his room light blue. Up until this time I had no indication that Ian was retaining information about his world. But when I set him down on his changing table he reached up and patted the newly painted wall. He then looked carefully around at the other walls then turned his gaze on me. He had a quizzical look in his eye as if to say, “Why not paint the whole room?” This was a clear indication that he had “hatched” from that tight little symbiotic existence and was more engaged with his external world.

His awareness of the new wall color is also an example of Ian’s ability to “retrieve a schema related to [his] present experience and to retain that schema in active memory while [he] compares it with the present in an attempt to understand the discrepancy”. (Mussen, p. 136) This new ability, the enhanced retrieval of information from memory is, according to Mussen, the foundation for intellectual development. This was also our first external validation that our son was a fully intelligent being.

drinking milkIt was around this time that I realized that Ian had a distinct and unique way of interacting with the world. We were visiting a friend one day and Ian was crawling along her kitchen floor. He was headed directly for the dog’s water dish. My friend was concerned that he would either drink from the dish or knock it over and she started to remove it. Thinking that the water might be fun for Ian I asked her to leave the bowl on the floor and let him get wet and assured her that I would clean up any mess he made. Instead of making a mess however, he sat next to the bowl and peered into it. He then gently hit the side of the bowl and watched the ensuing ripples spread across the water’s surface. He became totally concentrated on this action and repeated for nearly 15 minutes hitting the side of the bowl with varying degrees of effort. So, where normal games of peek-a-boo and children’s rhymes held little interest for him the dog’s water bowl captured his imagination.

After this incident I began to take note of the types of activities that attracted him. Hinges fascinated him. He would open and close a cupboard door endlessly staring at the hinge. The pliability of paper intrigued him. He would slide a piece of paper over the edge of a table or the end of the couch and watch it bend. At the playground he would study the roundness of the car tires in the parking lot rather than slide down the slides or swing on the swings. I took all of these as evidence that he would be a scientist like his father. Later I would discover that these activities are typical of autistic children.

And yet, he seemed in most respects to be developing normally. At nine months he was walking and thrilled with the discoveries this elevated vantage brought him. Characteristic of Mahler’s Subphase Two – Practicing, Ian would toddle off while looking over his shoulder to be sure that I was still watching. And we did the classic dance of letting go and gathering up, of running away and running back.

After Ian’s first birthday I noticed that he was not meeting milestones in the popular literature. He was not interacting with his peers. He did not imitate adult actions. He did not stack blocks in towers of four or more. He did not verbalize. His vocabulary at 16 months consisted of three words: milk, cookie, and up. And yet his behavior on some levels was quite sophisticated. He showed evidence of empathy, which is one of the indicators of Mahler’s Rapprochement Phase. My mother came to visit us and Ian spent a wonderful week playing with his grandmother. At the end of that week my husband, who had been away on a business trip, returned home. Ian’s attention now switched to his father. At one point Ian left his father’s lap and went to hug his grandmother. He patted her on the back in a comforting gesture as if to say, “I haven’t forgotten you, Grandma!”

Ian on the lawnHe was in daycare and although he was quite different than the other kids – he didn’t interact with his peers and he would attach himself to one caregiver at time – he did adjust to me leaving with what appeared to be normal separation reactions. At first he experienced a rather intense anxiety when I left him but after the first couple of days he accepted the fact that I would leave and he seemed confident that I would return for him. Thus indicating that he had some level of Piaget’s Object Permanence – an awareness that I continued to exist even though I was not present.

The coping mechanism that he developed at this time and to some extent he still uses was to attach himself to one caregiver – the teacher, an aide, etc. – and give his attention only to that one person. In this way he made that other person a surrogate or substitute mother so that he would continue to feel safe and secure. One could view this behavior as similar to that of “Wendy” in Mahler’s study and say that Ian had “an overwhelming need to remain the narcissistic baby”. (pg. 162) But I think it more likely that without the appropriate language to facilitate his understanding of mother’s absence Ian needed to create a substitute mother.

After his second birthday we became very concerned with Ian’s lack of language development. Not only did he not use language to communicate even the most basic needs, he showed no interest in symbolic play. At this age one would expect a child to be entering Piaget’s Preoperational Stage of cognitive development – making car noises as he pushes around a block of wood, using a stick as a gun, or creating scenes with his stuffed animals. Ian did none of these things and was rather nonplussed if we tried to engage him in this sort of play.

Our pediatrician felt that it was too early to tell if there were serious developmental issues at play within our child. As Ian seemed so typical in other areas – height and weight were certainly within the bounds of normal, he made good eye contact, was very physically coordinated. We were told that he was most likely a “late talker” and that one day he would surprise us by speaking in complete sentences.

Our mother/child relationship seemed to hit a plateau when he was around 30 months old. Although he didn’t cling to me in an obviously aberrant way he didn’t ever truly let go of me either. He was always acutely aware of my presence in a room and I knew that he needed me on some very deep basic level. We had an extraordinarily strong bond. Though he was virtually non-verbal we communicated quite well. When I didn’t understand him he would push me where he needed me to be and guide my hand to the object he wanted.

It was at this time that he began a long period of night waking. He would wake up around 3am and recite entire scenes from Winnie-the-Pooh videos. At first I thought this was clever but I soon realized that it was an obsessive/compulsive behavior and that Ian was not entirely aware of what he was doing. The only way to pull him out of his recitation was for me to enter into the story and take the part of one of the characters. Having me enter his fantasy world seemed to jolt him back into reality and then I could gently rock him back to sleep.

Ian at 3Just before his third birthday Ian was diagnosed autistic. For the last three and half years we have worked intensely on his language skills. Mahler notes that the development of language is crucial to the process of individuation. The ability to name objects and to express ones desires is fundamental to the child’s ability to control his environment. Ian had come a long ways in his non-verbal world but in order to truly differentiate himself from me, to stand on his own, he needed to express himself and make himself understood by others. Without language Ian was in a developmental limbo. He had reached Mahler’s Fourth Subphase – Consolidation of Individuality and Emotional Object Constancy but with no verbal tools he was unable to achieve the main tasks of this stage: “(1) the achievement of a definite, in certain aspects lifelong, individuality, and (2) the attainment of a certain degree of object constancy.” (p. 109)

He was three years old before he could say Mommy and almost four when he finally used the personal pronoun, I. Mahler stresses that the Fourth Subphase is a period when verbal communication develops rapidly and aids in a child’s progress toward individuation. Not only does a child develop a lexicon of self-defining terms but he develops a sense of time which allows him to have concrete expectations about the comings and goings of his mother and therefore to “tolerate the delay of gratification and to endure separation.” (p. 116) With no sense of time, no strong language ability and few social skills Ian’s progress through this phase has been seriously prolonged. He continued to rely on a mother substitute (usually a caregiver or teacher’s aide) rather than developing an internalized concept of mother.

tunnelAs Ian’s language improves he is beginning to hit the milestones of cognitive development. He is engaging in symbolic play. He now routinely builds complex worlds of train tracks and station houses, populating them with stuffed animals and doll figures. He is becoming far more independent and often pushes me away or sends me out of his room so that he can have privacy. He no longer needs me to sleep with him at night though he will often call out for me to tuck him in or perhaps just to make sure that I am still there. He is also becoming very aware of sexual difference – pretending to confuse the gender of his classmates so that I will correct him and often announcing with confidence that “Ian is a girl” and waiting for my response. He is developing a sense of narrative, an understanding that first we will do this and then we will do that. All of these elements are building blocks for the creation of his distinct and quite unique self.

My son’s development, though far from the norm in terms of temporal space, shows a clear progression along the path of individuation. I may never know what makes him autistic but I may get a glimmer of what makes him Ian.

References:

Mahler, M.S., Pine, F., and Bergman, A. (1975). The Psychological Birth of the Human Infant. New York: Harper Row.
Mussen, P.H., Conger, J. and Kagan, J. (1979). Child Development and Personality. New York: Harper Row.
Verny, T. and Kelly, J. (1981). The Secret Life of the Unborn Child. New York: Simon & Schuster

Autistry Newsletter August 15, 2016

Posted By on August 15, 2016

FestivalLogo1web-768x390What a great summer! New faces, cool excursions, and lots of great news. But before we look back, let’s look forward to this coming weekend. Steve Gatlin of Special Affects Films has organized a film festival “dedicated to showcasing the finest films being produced for, by and about the special needs community in the world today“. Autistry has one entry this year: Nat Snell’s Alphabet Mission to Mars. Information on the festival can be found on the festival website. Tickets for the event and for the individual screenings can be purchased online.

nats150Nat’s film will be shown in the Short Film group which starts at 4:45pm on Saturday (note that is after the Autistry Saturday workshop!). Please join us as we support Nat and all the filmmakers at the Special Affects Film Festival.
 

EMBoard Business: In July we welcomed Emily Woods to the Autistry Board of Directors. Emily grew up in the heart of the maker movement helping her family create MAKE Magazine, the Maker Faire, and TechShop. Emily graduated with a BA in Environmental Studies from UC Santa Cruz. She is the Member Ambassador for TechShop, Inc., oversees the member experience at TechShop San Francisco, and is currently part of the advance team launching a new TechShop in St. Louis, MO. Emily brings enthusiasm and a full tank of Maker Spirit.

Summer Fun:
This year we began a new program of adventure – Autistry Excursions. Hosted and organized by the Autistry Support Network, these day trips were a huge hit. As president of the ASN, Dick Dinkelspiel took the lead and coordinated trips to Alcatraz, the California Academy of Sciences, a train trip to the California State Railroad Museum, and a day at Stinson Beach. We started these as summer outings but will continue the excursions throughout the year. Oh, the places we’ll go!

whitewaterWhitewater Side Trip:One trip that we will definitely organize is a spring or summer weekend of whitewater rafting on the South Fork of the American River. In July, Betty Lituanio organized an event through Environmental Traveling Companions (ETC) in Placerville. Ian, Janet, Lisa, and Reed went with a group of about 25 eager rafters. It was fabulous. The campsite was pristine. The sun was shining. And the river was refreshingly cool (OK, it was damn cold!). Spiraling through the rapids is an unforgettable and exhilarating experience. This should be on everyone’s bucket list.

Writing on the Wall: “We must write about this” has become a mantra at Autistry. Unfortunately we are so busy that we rarely get the quiet, uninterrupted time necessary to compose coherent missives. However, Dan did manage to write a post about Ian leaving home. Yes, almost 2 years ago Ian moved into a house with 3 other young men. Launching our autistic kids is not for the faint of heart. You can read Dan’s post, Oh Yeah, Ian Moved Out on the Autistry website.

Two of our Dominican University OT mentors have written a great article about their work at Autistry. Erin Chaffee and Bryant Luong worked with a young man, Michael for several months. They were very impressed with Michael’s ability to incorporate new strategies that helped him with self-regulation, posture, focus, and attention. Their article also highlights the power and effectiveness of Autistry’s Project-Based Therapy. Michael’s R3ptor – an OT Perspective can also be found on the website.

We have several new initiatives planned for Autistry. But talk of those will have to wait until the next newsletter.

Janet, Dan, and the Autistry Team

Michael’s R3ptor – an OT Perspective

Posted By on August 15, 2016

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On January 9, 2016 at Autistry Studios, we met Michael, a friendly young man, who was working on a project, building a Lego MindStorm R3ptor, with an Autistry mentor. Michael’s hands were shaky and he was easily frustrated when pieces did not immediately fit together. “I can’t do this. Help me.” This was a common phrase we would hear.

Michael needed 5 minute breaks after 10 minutes of working with mentors. Breaks included talking about animals and using a stationary bike to stimulate his senses. By the end of the month, we realized his frustration levels would decrease in quiet, well-lit rooms, so we retreated to the library to continue working on his project. Here we focused on orientation transference from the picture to the object. Many times, the object got turned around when brought close to his body.

IMG_6111Each week Michael increased the number of steps he was able to complete on his project over the course of a 4-hour workshop. We saw that frustration levels continued to decrease. As his project gradually but steadily neared completion, we were both excited to see all of the progress he had made. In addition to his actual project, Michael began to physically alter his posture. This allowed him to access his project with greater ease and with greater comfort so that each work session became longer.

michael at eventWith our project almost done, it was time to create a poster and prepare a speech because he was scheduled to present and speak at the annual Autistry Maker Banquet on March 19, 2016. Michael chose his favorite pictures, cut them out using a straight edge cutter, framed them, and independently prepared his own speech! We videotaped him, allowing him the freedom to practice on his own. “I feel good about presenting”, he said. On the night of the Maker Banquet, he looked around the crowded room and said “There are too many people”, so we used calming techniques and positive reinforcement, including practicing his speech. As a result, Michael was able to get up on stage in front of a large group of guests to demonstrate and describe all of his hard work on his project over the past three months.

Michael smilingLooking back these last 6 months, we were fortunate enough to spend time with Michael at Autistry Studios and it is difficult to truly fathom the amount of progress he’s made in such a short period of time. From an ergonomically biomechanical standpoint, his improvements in posture, with relevance to both sitting and standing activities, can be generalized to many different settings while engaged in meaningful activities. Earlier on during our working sessions, Michael constantly needed reminders to carry the boxes of Legos closer and perpendicular to his chest, as opposed to either further out in front of him or angled diagonally upward. These reminders became fewer and fewer as he gradually took to observing proper body mechanics with greater independence. Additionally, he began moving his chair closer to the table to allow for improved postural control. This proved incredibly helpful especially when working with and manipulating some of the smaller, more precise Lego pieces. Finally, he began using his legs more often when lifting heavier objects from the ground as opposed to using the muscles in his lower back.

Selecting and working diligently on preferred activities at Autistry Studios has allowed Michael to not only make gains from a biomechanical perspective, but also from psychosocial and behavioral standpoints as well. As mentioned previously, we observed marked decreases in levels of frustration while working on his projects over a timespan of just a few months. Regulating himself appropriately while observing social rules of conduct during lunchtime was a strength of Michael’s, but being able to endure through times of difficulty and push onward while working on his projects was a remarkable feat to witness, especially when noting low baseline levels of activity tolerance when we first met him.

IMG_6058The duration and frequency of rest breaks while working on his project has decreased, indicating greater patience and ability to persevere through challenging obstacles. Michael has also demonstrated increased flexibility when receiving denied requests or when working with changes in routine. For example, when we discovered that his R3ptor projects was missing a piece, he was able to skip the step, work ahead, and patiently wait for staff to purchase the missing relevant Lego piece. Finally, daily conversational skills have also improved. Michael is better able to remain on topic and participate in social reciprocity with peers or staff during conversations while maintaining appropriate distance between himself and others.

Erin Chaffee and Bryant Luong

Oh yeah, Ian moved out…

Posted By on 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

Posted By on 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.