John Elder Robison is and has been many things: author, autism advocate, educator, creator of special effects for rock concerts, parent, engineer for Milton Bradley, government advisor. He is also a thought-provoking and entertaining public speaker, as I learned at a recent presentation.
He spoke on the campus of University of California, Riverside, at the invitation of its SEARCH Center. (“[T]he mission of SEARCH is to provide support, education, advocacy, resources, community and hope to families who have loved ones on the autism spectrum.”)
I first became aware of Mr. Robison several years ago when an acquaintance who has a son with Asperger’s recommended reading Robison’s book Look Me in the Eye. In it, Robison describes his turbulent childhood, teen, and young adult years with undiagnosed Asperger’s.
One of Robison’s current pursuits is advocating for the autism community to unite, find their voice, and stand up against discrimination and negative media coverage. He began his talk at UCR by describing the parallels he sees between the harsh treatment people with autism face and the discrimination Jews, blacks, and the LGBT communities have faced. Society became more accepting of those groups once they organized and became vocal about not being lesser humans. People with autism must do the same.
Robison said that by the time people on the spectrum reach young adult years, they’ve repeatedly absorbed the message (through words, actions, or reactions) that they are failures. As a result, their motivation to engage in the world is very low. Thus we have a generation of people with ASD (autism spectrum disorder) “hanging out in the basement,” with their talents and gifts untapped. In Robison’s view, organizing a movement to increase society’s acceptance is the way to break this cycle.
He shared that some researchers believe that the brains of people with autism have more plasticity than is found in neurotypical brains. In the extreme, this plasticity may account for the abilities of savants, It also leads to the exceptional skill many people with autism develop in fields that interest them. However, researchers speculate that the flip side of this increased plasticity is emotional blindness.
At this point in the talk, Robison reminded the audience that his memoirs document how he was chronically oblivious to the emotions of everyone else. Then he asked us, why would someone like that invest his time to advocate for others, as he’s doing now?
He credits his increase in empathy to having received experimental TMS treatments beginning eight years ago – the topic of his newest book Switched On.
TMS, or transcranial magnetic stimulation, targets specific areas of the brain with magnetic pulses to increase function. It’s noninvasive and has few side effects. So far in the US, the FDA has approved its use in treating depression that has been unresponsive to medication. Robison was part of a clinical trial to see if TMS can alleviate the emotional blindness of people on the spectrum.
After his first session, he was disappointed that his ability to interpret emotions from facial expressions (as tested by the researchers) had not improved. However, other things did change. The first thing he noticed was the extreme clarity with which he heard and appreciated every element of familiar music recordings. The researchers told him this was a side effect.
With continued sessions, he experienced other effects related to emotions – not all of them having welcome outcomes:
- For the first time in his life, he became emotional about tragedies that befell people in other parts of the world.
- His wife’s depression, which had never bothered him before, affected him so much that they had to divorce.
- He can’t go to movies, because their emotional impact causes him to cry a lot.
- He realized that most neurotypical people, far from being the happy, fulfilled, caring people he’d imagined them to be, walk around burdened with sadness, fear, anger, and greed.
- He almost became suicidal. The clinical staff pointed out to Robison that unlike most people, he hadn’t had a lifetime to adjust to feeling emotions.
- He can now collaborate successfully with others. Before, his successes had only resulted from creating things on his own.
If you’d like to read more about the potential of treating autism symptoms with TMS, here’s a clear, cautious article written by Lindsay Oberman, a TMS researcher at Brown University. This report from NPR also emphasizes caution in interpreting the results of the few trials that have been conducted to date.
Overall, there’s widespread agreement that more studies are needed, to investigate concerns such as which parts of the brain to treat, how frequently, with what dose, and at what age. Those interested in participating in a study of TMS therapy for autism symptoms can check out the US National Institutes of Health Clinical Trials website.
TMS is also being studied in relieving disorders such as anxiety, addiction cravings, adult ADHD, obsessive-compulsive disorder, and schizophrenia. If studies on these or other disorders are of interest, you can change the search term on the Clinical Trials webpage to see if any are being conducted in your area.
Going back to Mr. Robison’s talk: he summarized by saying that TMS has the promise of an emerging technology. As with other types of therapy, it’s not for everyone, but it’s probably good for some.
And while we all welcome the expansion of the toolkit for treating problems associated with autism, Robison believes the most powerful way to improve the situation of people on the spectrum is through forming an active, vocal community.
The contents of this post come to you courtesy of Mary Mazzoni, who has put together the tremendously helpful blog Life After IEPs. And yes, there is life after IEPs and special education, even as many of the institutional supports available during the K-12 years go away after the student finishes school.
Being prepared for the issues faced during transition to adult life can make a big difference for you and your kiddo. One way to prepare is by soaking up the tips and wisdom found in sources like Life After IEPs.
Recently Mary sent blog subscribers a letter with links to updated versions of the most popular posts on Life After IEPs. She agreed to let me share an excerpt of the letter with you. That’s what you’ll find below!
The information in this post comes to you courtesy of Jackie Martin of Vocational Steps. She’s always on the lookout for ways to provide atypical young people with job training and opportunities, and had sent me a list of several programs already in place around the US.
As Jackie told me in an email, “…the different programs/companies [in the list] actually came from different people who would email and say, ‘I found this link and it sounds interesting’ and then I researched each one to get their information. I wanted to be able to show people here in CA that there are programs for our young people – we don’t need to reinvent the wheel, we just need to duplicate it! …[T]he more people know about successful employment models, the quicker we can start duplicating them in our own cities and be able to have more of our young people employed.”
Jackie is now “working with a new company called ‘CoNNect’ (connectproductsandpeople.com). It is based in Murrieta CA with the main warehouse there, a small one in Colton and now one in Corona. The oversimplified description is that the CEO–Jonathon Mills–wants to help people with disabilities (and veterans) get some work experience and then help them find a job out in the community.” The jobs have included things like office work and sorting recycled plastics, with more possibilities on the horizon.
What follows is the list of particular programs in California, Indiana, Massachusetts, and North Carolina. If you live near one of them, you might want to check it out. For the rest of us, learning about these programs may help us figure out what can be done in our own communities.
EXCEPTIONAL MINDS – Sherman Oaks, CA
A non-profit vocational center, animation and working studio for young adults on the Autism Spectrum.
- Accredited certificate from Adobe Flash Systems (Programs taught: Flash, Photoshop, Dream Weaver or Mocha Pro)
- 3 year Program (10 months per year, 5 days per week)
- Vocational center and working studio
- Visually-gifted ASD individuals
- Graphic Arts
- Web Design
- Visual Effects
- Full-Time Program: 3 yrs., 5 days per week, 10 months per year
- Private Lessons: To prepare individuals for the Accredited Program
- Summer Workshops: 6 weeks, 3 sessions available:
- Video Game Creation
- Movie Magic-Visual Effects
Exceptional Minds – 13400 Riverside Drive, Suite 211, Sherman Oaks, CA 91423
EXTRAORDINARY VENTURES – Chapel Hill, NC
Non-profit organization that creates and nurtures self-sustaining small businesses designed around the skills of the young adults with autism and developmental disabilities that serve as its workforce. They currently employ 40 people. Some work 2 hours per, 2 days per week and others work 30—40 hours per week. “EV” operates six (6) ‘ventures’:
- A full laundry service (laundry and dry cleaning)
- Office services (collating, stapling, stuffing envelopes, etc.)
- Candles and gifts, sold in their gift shop (they make their own candles and scents)
- Cleaning and maintenance service for city buses
- An event center that rents space for meetings and conferences, and they staff the event
- Parking at football games for the University of North Carolina
Extraordinary Ventures – 200 South Elliot Road, Chapel Hill, NC 27514
PATHFINDER REGIONAL VOCATIONAL—TECHNICAL HIGH SCHOOL – Palmer, MA
Vocationally-based, hands-on high school offering academics and vocational training to students who qualify.
- Serves students in grades 9-12 who, if they qualify, attend from nine surrounding cities
- Information night for potential candidates is offered to 5th—8th graders at their respective schools
- Offer 14 “shops”:
- Collision Repair
- Automotive Technician
- Health Assisting
- Food Management
- Business Technology
- Programming & Web Design
- HVAC-R (Heat, Vent, A/C & Refr)
- CAD (Computer-Aided Drafting)
- Each “shop” is a total hands-on learning experience (e.g. Students build a house every year)
- Co-op program: Second semester of junior and senior years, students alternate working at a business for one week and studying at school the next week. They are paid by the employer.
- Very strict selection criteria
- They provide for students with special needs and have had Life Skills students in their program
Pathfinder Regional Vocational Technical High School – 240 Sykes Street Palmer, MA 01069
MINDSPARK – Santa Monica, CA
Socially Responsible Outsourcing
Many U.S. companies outsource their software testing to offshore companies in India or China, which has many drawbacks due to the time zone and cultural differences. This leads to communication inefficiencies that may increase the effective cost of these services. The software industry is already entrenched in a model where the software testing services are not performed at the customer’s location. In effect, MindSpark will also be an outsourced IT company, but instead of customers outsourcing to companies in India or China, they can outsource to a socially conscious company in America offering high quality services at competitive rates. Any company that chooses to outsource their software testing work to MindSpark can feel satisfaction that they are employing people in America and providing opportunities for individuals with specialized abilities to be gainfully employed.
Core Commitment to Social Purpose
Consistent with its socially responsible mission, MindSpark Inc. was incorporated as a benefit corporation in the state of California in May 2013. A benefit corporation, legal in California since January 1, 2012, allows entrepreneurs and investors to organize corporations that can pursue economic and social objectives simultaneously. The benefit corporation has a core commitment to social purpose embedded in its organizational structure, with an additional commitment to full transparency and accurate assessment and reporting of its social, environmental, and financial performance and impact.
The MindSpark Training Academy (MTA) was incorporated as a non-profit organization in June 2013. In late 2014, MTA will attain 501(c)(3) status and will become eligible for funding from foundations that support organizations with tax-exempt status. A higher level of funding will allow MTA to offer more deserving young adults the opportunity to obtain the training required for employment as software testers.
The principal owners of MindSpark Inc. are working without compensation to launch and manage the enterprise. Growing the business will enable MindSpark to train and hire increasing numbers of qualified and deserving employees. As a vital and socially conscious benefit corporation, MindSpark will provide profits to be distributed to its employees in the future.
MindSpark Training Academy
The MindSpark Training Academy was created to provide vocational training to talented and qualified individuals with specialized abilities, particularly young adults on the autism spectrum. The customized training will enable these individuals to use their interest in technology, keen eye for detail, and sustained focus to earn a living. Attention to detail and sustained focus are highly valued in the field of software testing, which can be enjoyable for people with an aptitude for finding patterns and irregularities, and highly satisfying when problems are identified in the software that is being tested.
Candidates who are interested in the training program will be asked to fill out an application form and an assessment checklist prior to being invited for an interview and further assessment. Only those candidates with a high likelihood of completing the program will be accepted for training.
The MindSpark Training Academy plans to offer four 11-week training sessions per year, and may also offer accelerated 6-week training sessions. Training is offered free of charge. After completing a training session, qualified trainees will be offered a 3-month paid apprenticeship with MindSpark Inc., which subsequently leads to employment as a paid software testing analyst. In collaboration with Square One and MindSpark, we have a team of trainers and experienced test leads who will provide a supportive, safe and respectful environment.
Our MTA Manager of Training and Development, Judy Metz, has a doctorate in Psychology, a Master’s degree in Educational Psychology, and twenty years of experience developing and implementing software solutions. Our trainees will have an understanding teacher with real-world experience to guide them towards their new careers.
Interview and Assessment
11-Week Classroom Training with Certificate of Completion
3-Month Paid Apprenticeship
MindSpark – 2525 Main Street Ste. 214, Santa Monica, CA 90405
GREEN BRIDGE GROWERS – South Bend, IN
What We Do
We provide skill-matched employment to underserved young adults on the autism spectrum using an innovative highly-productive agricultural method, aquaponics.
Skill-Matched Employment for the Autism Spectrum
Green Bridge Growers is a venture with a strong social mission, and sustainable practices are at our core. With 90% of adults with autism experiencing unemployment, Green Bridges leverages new jobs for those with autism in our community – using aquaponics to grow vegetables productively throughout the year.
The Other 90% Problem
Unbelievably, 90% of the food we eat in Indiana is grown out-of-state, despite the skyrocketing demand for locally grown food. We thought, why not connect this 90% problem with the lack of employment for those on the autism spectrum and develop a solution that also contributes to our local community? Green Bridge Growers was created from this solution-oriented way of thinking.
Our growing practices are the very best. We use organic growing methods and materials, grow year-round, and employ the innovative new farming method, aquaponics, into our system. Within this system, fish and plants grow in harmony, producing faster growing rates and much less waste. Our customers include high-end restaurants and grocery stores, and we’ve begun exploring a future relationship with Notre Dame Food Services.
As part of our professional development goals, we’ll further engage our workforce through leadership training, active participation, and team building, allowing our autistic employees to accumulate integral new skills and competencies.
How We Do It
The innovative aquaponic method of farming that we use in our venture has the unique ability to grow fish and vegetables in tandem. Fish grow in tanks in a closed-loop ecosystem, where fish effluent is filtered and fertilizes the plants we grow. The plants then cleanse the water for the fish. Aquaponics uses 90% less water than conventional farming, and has the additional benefit of reducing time to harvest by one-third. Plant growth is greatly accelerated by aquaponics!
When we learned of aquaponics several years ago, we began attending intensive training sessions to learn hands-on practical skills and concepts. Aquaponics is such a phenomenal outlet for our own interests and skill sets, but it also is an outstanding match for the skills of those with autism. We’ve learned from the best in the field, and maintain membership to the US Aquaponics Association.
We manage other installations, such as the Century Center Skywalk in Sound Bend, that feature year-round growing using soil enriched by organic materials like worm castings and coconut coir. Incorporating great organic nutrients into our soil and our aquaponic system helps us raise plants that are productive, healthy, and of the highest taste and quality for our customers. We take tremendous pride in providing jobs for the underserved of our community, while keeping our products fresh, organic, and as close to the customers as possible!
Green Bridge Growers
Innovation Park Notre Dame – 1400 E. Angela Blvd. #148, South Bend, IN 46617
Young people finishing school and entering adulthood need a source of income. Unless they’ve inherited a fortune or have turned to a life of crime, that means getting a job. Looking for employment is often a slog, but the seeker has to be persistent. Beyond that, the processes of landing a job and holding onto it can also have unpleasant challenges – especially for someone with hidden or obvious disabilities.
As I shared in the previous post, our son Nathan has submitted a half dozen online applications to supermarkets over the last several months, with no response so far. Disappointing, but not too surprising given his lack of experience. However, the job-seeking experiences of our son Alan over the last year really have us struggling to remain undaunted. He’s had training in a few fields and gotten certifications; he’s been getting help from two government-sponsored employment assistance agencies; and has applied to many, many places. The result? The loss of one job, another job eight months later that lasted one day, and several close calls for employment.
Probably other atypical young job seekers have these kind of setbacks – but do they have this many? Here’s the rollercoaster we’ve been on:
- The security guard firm he was working for (they had just given him a raise!) transferred him to a different slot that, it turned out, was already promised to a different employee. The firm said they would try to find another placement for him – but never got back to him and wouldn’t return his calls.
- An acquaintance of his wanted Alan to help with his start-up supply business. It was sure to be lucrative because demand was high and the fellow already had signed contracts with clients. But after weeks of waiting for pieces of machinery to arrive so they could get production rolling, the acquaintance used Alan’s help sporadically, then found someone else who already had experience with the product. Suddenly Alan was frozen out, and never got paid for the times he had helped with set up and production.
- Alan passed the written and physical tests for becoming a deputy sheriff, but decided not to pursue the application further once he learned a successful applicant needs to have at least one year of steady job experience.
- A staffing agency found a position for him in a warehouse. On his first day, a pile of boxes fell on him (not his fault). The agency required him to get checked out by a physician the following day. Alan was ready to go back to work on the third day, but the agency said they don’t usually send workers back to the same place after an incident like that. They were going to try to place him in another warehouse, but that never happened.
- Alan interviewed well for a door-to-door solar energy sales job, but didn’t get an offer.
- He next attended a company-sponsored trucking school where he learned to drive big rigs – and he found to his surprise that he liked it! He got his CDL A permit and was doing well, until: the day before he was to test for his license, the company decided that his solo motorcycle accident 3 1/2 years ago was a dealbreaker. (By the way, Alan had disclosed the accident the first day he enrolled.)
- He jumped through all the hoops for becoming a ride-share driver. The only problem was, the company doesn’t allow drivers to have licenses that are a mismatch with the official record at the Dept. of Motor Vehicles, and Alan’s physical license card didn’t reflect the CDL A permit (which he wanted to keep active until he could manage to get his license).
- Alan tried another company-sponsored trucking school, where the accident was not a factor. Again he did well – the company even sent him to orientation before he tested for his CDL license. Unfortunately, when it was time for the road test, Alan developed a bad case of test anxiety. He was allowed three tries, each on a different day, but was so jittery that he failed each time.
- While regrouping from that letdown, he was contacted by a company he’d been trying to get in with for years. (A friend of ours who works for the company had a copy of Alan’s application and would pass it to the appropriate manager when entry-level positions became open.) The stars aligned; Alan was interviewed and offered the job right then! All he’d have to do is pass the background check, physical, and drug test. What could possibly go wrong this time?
Well, the physical exam included a grip strength test. Alan says the clinic staff member handed him a device and said “squeeze this.” Alan squeezed pretty hard, but not with 100% maximum effort. The staff member saw the first reading and said “next two times, squeeze with all your might,” which Alan did. You guessed it: the low first reading skewed the average of all three readings to below the acceptable measure of grip strength. He was not allowed to retake the physical. No job after all.
Is it really possible for someone to have this much bad luck?
Maybe. Or, maybe underlying fear of becoming an adult is leading to self-sabotage whenever he comes close to landing a job. Or maybe the hiccups in his brain’s executive function and information processing are contributing to these near-misses.
Whatever the reason, the disappointment after each fizzled opportunity is hard to bear, for him as well as his trying-to-be-patient parents. We bounce back as best we can and look forward to the “good fortune” that follows bad luck, as mentioned in the proverb. Meanwhile, we gotta give Alan lots of credit for trying different things, for seeking help from counselors, and for just plain hanging in there!