Autism Being Stigmatized

With it being Mental Health Awareness Month nationally,  my day program for their weekly newsletter we were asked to give our opinion on the changes of stigma. While it has good and bad points, the autism community has its points also.
I have came across several disturbing points of misconception of Autism.

1. Family Guy mocking an autistic being unable to verbally communicate.

I’ve been a Family Guy fan since the first season almost twenty years ago and I do admit they push the boundaries alot of the time. It’s been a hotbed of debate. They were off a few years after season 3 but returned years later. The line continued to be pushed and I know if you don’t like it don’t watch it. That is a belief that I value dearly. However, when autistics are generalized, it hurts.

I recently came across a Facebook Watch video of dark special needs jokes of Family Guy. I thought I would have an look as Peter has memory clips he says that he was scared like the time he Sat next to the autistic person in the doctors office. The clip shows the autistic vocally stimming.

He was scared. I was done.

I admit I get scared sometimes about autistics that stim loudly or how to interact with them. I know that they can’t hurt me and they just want to get their point across just as much as I do. However, when you generalize the autistic community in those few seconds, it leaves a bad taste in my mouth. I know, I knew what I was getting into, but it just is a gross misrepresentation of the community. I do recall an early episode where his doctor diagnoses him as the R word, now a word no longer used (thank God) Nonetheless, it’s appalling because there so ones that are classified as such and are amazing people, regardless of their ability. Which moves us into the next misconception.

2. Being known as the R word or Developentally Disabled.

The R word is one I absolutely can’t stand. Prior to 2008 it was known as that. Those given that classification and some still live and endured the agony of being called it, being diagnosed it. Until a few decades ago the media used it like a household name, its just wrong and when I hear that word. It makes me ill.

Autism is a neurological condition, not specifically a physical or mental disability. Nonetheless, it’s classified in the DSM under the Developental disorders. Yes it can be coupled with other Developmental disabilities, but with the coupling as one Autism spectrum disorder, it’s misconceived as a development defect, which is not true for all autistics.A spectrum is just that. It’s a wide variety of symptoms and flaws. Myself I am proud of my Aspergers and fortunate enough to have the ability to inherit the diagnosis, the new diagnosis does a huge disservice to autistics that could have been diagnosed with Aspergers after it was coupled. Yes he was discounted for his works and beliefs and other information, it opened a door to a community for twenty years that made us feel better. We are not inferior to levels of ability, however we have a multitude of issues some similar and some not to the autistic community as a whole. It just doesn’t make sense. 

In many U.S. States and territories funding streams for autism are placed under the Developentally Disability arm of human services, again another disservice to the autism community because I personally feel with those of all ages receiving diagnoses services will grow and need to be more centralized. We shouldn’t be looked as less than others in any case we should be valued members of the community.

3. The belief that all autistics are heterosexual.

Recently, I read a blog from a prominent autistic that stated that one of the nations leading autism advocacy groups vehemently denies that 70% of autistics are not heterosexual. Now I know this will spark debate but I think it has to be acknowledged. Its the reason why many autistics debate and sometimes protest against the prominent advocacy organizations. It’s not sunshine and rainbows (for them), it’s not the picture they want to portray the picture perfect autistic. Until just this year, one of the largest organizations accepted that autistics don’t grow out of it and started to feature adults in campaigns. They are believers in ABA (think what you want) which has it’s pros and cons. 

You simply can’t be forced to identify yourself as something you hate being or trying to block something you really like because you are brainwashed to think one way but you absolutely feel the polar opposite. If we give autistics and others the freedom who they want to be, they should be allowed to so while being educated properly and in their terms what is appropriate and what isn’t. Sexual education, while essentially non existent in the special education realm needs to be taught or.advocated for,.again in their terms they they can understand..They have rights we should honor their wishes. Yes it has a great deal of issues but there’s helps and resources there.

4. The Tik Tok Autistic Challenge

Yesterday I saw a autistic professional speaker highlight this and I’m appalled.He shares my sentiment that it seriously sends the wrong message to youth that it’s ok for mocking the autistic community. We are autistics that are valued members of the community not to be mocked on the latest social media marketing strategy. It needs to stop and moderation must be taken to the fullest extent permitted. 

Where going to the next level, but nothing’s changing

So another week has came and gone. Last Friday, our State Government announced that effective this Friday morning we will be moving to the Yellow phase of the reopening plan for the reopening plan. However, not much in what was considered my regular routine will continue to exist. I have came to terms that if I do return to an independent setting in the new phase, I will indeed struggle and will absolutely relapse, without a doubt. My parents have been very accommodating by allowing me to stay with them through these trying times, and indeed they have been. They’ve offered me to continue staying here as they know right now it’s to my benefit to do so.

Now I don’t want to deny that in the so called “New Normal” that I will be able to manage, just in these uncertain times I need regularity and additional supports because most of what’s in my routine has been slipped away and even though in my prior routine I did take a day off from work and programming every week sometimes I did struggle.I personally feel that it’s best for me to continue to follow the present routine.

The media does push our government for the guidelines for the next phase, honestly no one in the world has the answer. There’s no vaccine or cure at this point for Covid 19 and there won’t be for some time and it has to be tested and pass through all the regulatory channels before being produced en masse. Nor is there a cute because no one is sure where it came from either.Essentially, it will take some time for either to occur. There’s also uncertainty about a second round of the virus returning this fall, thus restarting the whole process from the start

Coming back round circle to me, I am extremely anxious when going out in public. I do my part faithfully by physically distancing a following our state mandate of wearing a mask, but I get frustrated when others do not practice these new norms. Furthermore, even when stores place barriers and signage up, it is for a reason in order to ensure that we as customers are safe along with the masking and physically distancing. For me to.cross paths with another customer in an aisle going in the wrong direction, flying around me in a rush, not keeping their distance at a cashier stand or not even following the masking mandate not only irritates me but makes me fearful of my safety.

Yesterday was the first time in just shy of two months that I’ve had take out other than pizza. I visited the Subway in our Wal-Mart which like all restaurants is not allowing customers to dine in. I was astonished how clean and the safeguards taken for our safety like not leaving things out like straws, napkins,drink cups, etc. However when a customer takes a chair from atop a table because it’s placed that way for a reason, likewise this was occurring during my turn in line and it did distract me immensely as did the employees. It may have been innocent, but people across the country have been protesting against the restrictions, and I think to the point of obsession with this could be like the Woolworth protest during the civil rights movement, although it was peaceful protest, recent ones have been dangerous. Additionally as I was exiting the store using the designated exit process which required me to enter the store and then turn around and exit, upon exiting, a gentleman without a mask enters the store using the designated exit, nearly brushing up against me. He was scolded for his actions by the attendant who tallies the occupancy of the store. 

Now I know that some people may think it is obsession, but for the average autistic this is a additional topping to the challenge of doing my part to be safe along with tolerating a confining mask, therefore I feel that I am doing my part to protect them even though I have been healthy. I don’t want to come across as presuming everyone I brush into could be carrying the Coronavirus. Its just the simple fact that I am healthy and am doing my part as a member of the community, I just wish those that don’t comply had the same consideration for themselves as I do. Not only is it a “rule” , I just know for me being any stage of ill is no picnic at best, so I feel it is to my benefit to follow the advice of government officials. I don’t particularly like wearing a mask because it constrcts my ability to vocalize properly and it does hamper my breathing among other things, but I compromise and do it because it’s the best thing to keep myself and others safe.

My weight has been unchanged from being at home, however I have been drastically reducing.my soda intake over the past few weeks going from buying at least a case of soda a week to only having a few individual bottles a week. Now I do enjoy my sweet tea on a regular basis by getting my so called “twins” ( two half gallons) at the Wal-Mart each week. Sometimes I do indulge in chocolate milk but in smaller amounts.
Back  to the situation at hand. I have gradually become cognizant of my need to be with my family during this period of uncertainty.  They are diligent in reminding to perform normal tasks such as laundry and cleanup of the areas in their house I use. They have got me medicating again routinely, something I’ve been ill managing for over a year before committing them to following their directive. They make sure that I am awake when I need to be and being where I need to be when I need to be. I have realized that I need to be more consistent with my personal hygiene as many individuals that are on the spectrum are having trouble with as well so it makes me feel better that I’m not the only one that is struggling with this and I need regularity for now. However,everyone is struggling with the great deal of uncertainty right now so I feel that I will manage my present had I’m dealt with right now and see it as an opportunity to adult and grow.

Almost Six Weeks Later, Still here waiting for the Yellow Light to go to the next step

As I stated in my earlier post today; I stated I would give a more thorough post on how I am doing since we have been following stay at home orders for almost a month and personally choosing to self-isolate since.

But first, we have to time travel back six weeks to see where it all began.

March 16, things seemed normal, the world was having a pandemic. As long as we socially distanced, we would be able to have some kind of normal, although it would be different. However as the day progressed into that evening, services and appointments would slowly be cancelled or changed to a different method. My mother would be teleworking the very next day.

While I knew for my employment I knew a plan was in place for at least the next few weeks, I would learn that staying at home would be the normal of the time. I did go to my psychotherapy the first week, wearing gloves provided to each individual receiving services. I would additionally learn that the staff there would block time between clients to disinfect and sanitize the used area before the next patient. Little did I know that would be the one and only visit thus far with those safeguards.

That weekend I would learn that my mental health outpatient provider would be approved by my medicaid and medicare and the commonwealth license authority to provide telehealth services. I opted in as those transporting me due to family teleworking and changes such as the necessitate to wear gloves, etc. I am so glad I was provided this option, following the tips that I later found out this tipsheet from SAMHSA that was helpful. Anyway, I enjoyed this new venture. Little did I know that I would be preparing for my employment supports to transfer to that method as well.

The following weekend individuals in my employment supports program would learn that it was approved for telehealth services . And we were off the next week. Just ending our fourth week in this method, this has brought a great deal of routine for me as I am the volunteer webmaster and social media liaison for that program so I would be depended on to play a pivitol role in the telehealth process and being that the Program Director was the only staff that did not get furloughed, he would be reliant on myself for a lot of technical assistance that I perform at least a few tasks everyday, even on weekends.

Later on that week, I received a phone call from my employer asking if I would be interested in taking a voluntary furlough. I accepted the bad news as there are coworkers that require a job more than I would. However, the next weekend I would learn that a lot of us, including myself could telework, although my hours would be allotted in half. I was thankful to still be earning and still have time to participate in other facets I was participating in.

With all these services (among others) being delivered this method, I would learn that many other public events would be held this way. Such as Municipal Government Meetings, Support Groups, NA/AA, etc. It is my opinion that this will be a new and welcoming addition to the technology that is already in place in the world. Having virtual tools such as ZOOM and others provides an opportunity to otherwise connect to others for support or other meetings when an in-person appearance is not always the best or can be done.

Now I’m not downplaying the need to no longer have in person gatherings. As for right now these things such as the Facebook Lives and Zoom or WebEx’s, YouTube Live’s are crucial dude to national guidelines, but for meetings or support groups in rural or large communities where transportation may be complex or limited or a need may occur where attendance would be able to be completed in person, then these methods are the ticket.

As for change, as many autistics thrive on routines as their normality, I can definitely relate As in my past two blog posts, I have had quiite a bit of change in the past three months due to first residential issues and now the COVID-19 National Emergency. However, my home is ready for return, however due to COVID-19 regulations in public housing, I will not be able to return a I need critical furniture to return and it has to be moved in with help.

I have seen other autistics in social circles I am involved in not handle the changes with such ease. With my first situation then the added stress of being home with my parents complicated the situation for me. I was acting out. However as mentioned in my last post, I learned the catalyst of what that issues is, something I knew for some time, but with being in close quarters for some time I exhibited the true colors of this effect. I am working on this with my therapist to learn skills to effectively execute the skills needed to overcome this flaw. It is one of my few left, as the others have progressed well, some with the help of the situations I have been in recently.

However, there is some difference to the routine and its like that album from The Cranberries “Everyone Else is doing it, so why can’t we”, where you see others in public doing things that would not be advised by health officials, such as being out in public excessively, not social distancing, not wearing a mask (we’re in a state that requires masks to enter public places.) Yes my parents, especially my mother shares with me her desire to shop like we once did, but she cautions me of the dangers of COVID-19 and the need to stay home. We have the sign from the local healthcare system that we are the #stayhometeam.

Sometimes I disagree with her profusely about this, but at the end of disagreement,when I have had some moments to collect my thoughts,. I remember that she is doing it for not only my safety, but the safety of them because it is their home and they are senior citizens and they have underlying conditions. In all honesty, going to the Walmart produces a magnitude of anxiety. Just getting in is a big hurdle with the associate at the entrance with the people counter with me fearing that they are going to stop the entry with me. Then you progress down the aisles that are mostly directional and a lover of signs I have no disagreement there. However, I dislike when someone travels in the wrong direction.

Even more so yesterday when I seen an associate call out a customer kindly for doing so explaining the why, how and so forth. Nonetheless they agreed, yet continued in the wrong direction,. Then there are those that do not follow the guidance of our governing officials by wearing a mask, social distancing so forth. Finally after you are able to get those purchases that you made, and you follow social distancing by keeping your space to only have the cashier walk away from the stand by turning off her signal light and closing her register after you have been waiting, I was angry, but kept my composure and got into the adjoining line.

Other trips with contact have been limited. I go twice a week to my house to collect the mail. I have gone to the food pantry to get what we needed am grateful for the help I receive from there. It helps me during this national emergency and is teaching me to rely less on restaurants as that has changed in restaurants only offering takeout, some with modified services. Yesterday, we had Domino’s Pizza only because I have seen and heard of their protocols and are aware of their reputation to the community, The other takeout I had during this pandemic was the same, just 33 days before.

The so called new normal won’t be the same and I know that for sure. We will be social distancing and likely masking for some time. I will be less relying on takeaway and more so on cooking from home. As for working, we wont be able to likely return until the green level, again under the same conditions is garnered such as social distancing and masking. Day programs and other services too will be this way for some time due to this pandemic. I personally do not want to contract COVID because I am harsh when sick with the flu, let alone something serious as this. I know it will be some time before normal as we knew it will return but it has brought to light so many possible advances for the less fortunate.

Also, Please check out my Coronavirus webpage as things I find are continually added to it. Today, we had our State Secretary of Health, Dr. Rachel Levine point out the Autistic and ID community in her press breifing and provide some resources which I will add later.

We’re not closing, we’re evolving – a tribute to employment and change

Tonight, I saw a post about a young woman with down syndrome working as a cart attendant at a Kroger and how some customers treated her, but she kept her composure and did her job anyway.

Likewise, this was my first job 17 years ago. My job also included cleaning, trash removal and bagging groceries. It wasn’t all sunshine and rainbows but at 18 and then making $5.15 an hour for 20 hours a week, I just did it as something to do. I only had the job for four months through a job shadowing program where the supporting agency paid the wages, something I later knew and now have a distaste for. Nonetheless it was work and when I was done I was glad.

Staying with that same organization for almost 17 years now, 16 at the same employment support program, and nearly ten years at my present employment position, I have garnered the skills necessary to work and am in what is now defined as a supported position and can have the position as long as I shall choose, and plan to do so.

Nonetheless, today is a monumental day as that store I first worked in 17 years ago hasn’t been under the same brand or management for 15 of those years, yet this day is bittersweet. The store is now a locally based store that has been around since 1947 in the hills of Appalachia started in humble beginnings in the founder’s home providing low frills and low cost food to those in need. Later that site would evolve in what we would know as a strip mall, but instead was the localized version of wooden building and roofed with tarpaper with haphazard construction. Nonetheless, it generated millions in nearly 50 years and as building code could no longer support it, the store I worked for would move to the county seat and become the flagship store of that owners set of stores under its brand.

However as the years would draw, I would continue to shop there, and memories would always remind me of where I stated my employment journey. That local business would open a mini store in the neighborhood some years before I moved here last year, and at that time when I first moved here you could sense a change as the building, a retrofitted office building terminated the leases of other tenants in the complex, before having constant construction over the past year.

Last summer an announcement was made that a bakery and cafe (like a Panera or Starbucks) would open adjacent to this store and it did with some fanfare a few months ago and I do like it as it is a nice addition to this neighborhood. However, in the mini-store and old supermarket, you could sense little by little change was happening.

Now I am not a liker of change, and this business as my local grocery supplier made this difficult. Things I ordered through the online grocery service were oftentimes unavailable. Things were moved in both, stores – often, I knew it was the beginning of the end

Then two weeks ago – the news came on Facebook

The store I started my employment in would be closed and operations would evolve between their first site as they constructed pole-type buildings there and the new bakery and the store in my neighborhood, which they claim would triple in size. Yet, everyday I visit the market to grab something and yet something is different, not to mention their old mentality of plastic and buckets on the floor to overstimulate the senses, let’s hope its a transition.

Nonetheless that supermarket that I worked in 17 years ago is closed for now, but as many things in our lives, we must put a close to the past and learn and grow from it – along with a evolving business that I grew up on, we must adapt and move on.

Young adults with autism flounder in face of service gaps

I am the mother of Elijah, a 25-year-old young man on the autism spectrum. When he received his diagnosis at age 4, following two years of terrifying seizures, I was teaching German literature at Bard College in New York. I loved being a professor, but when Elijah’s struggles began to have a greater impact on his and my daily life, I chose to switch careers and concentrate on education and advocacy — for him, and also for other children with autism.

During Elijah’s time in school, I saw gaps in knowledge and help for those on the spectrum. Although my focus at the time was on children, the lack of services has persisted, undermining a whole generation of youth with autism through their school years and into young adulthood.

This topic is of urgent importance: An estimated half million young Americans with autism will make the transition to adulthood over the next decade. A report released in April captures the story of this overlooked generation in hard numbers.

When Elijah was 9 and 10 years old, he was repeatedly bullied by a group of students at his public school. Yet he received little support from teachers and administrators, who were largely untrained in dealing with students with autism. He began having difficulties in the classroom. He had frequent outbursts, saying he wanted to kill himself, but teachers dismissed his behavior as a de facto expression of autism rather than as a sign of a communication deficit that proper support strategies could help remedy.

Something had to change — and fortunately, it did. With generous funding from a local philanthropist in our hometown of Woodstock, New York, and with cooperation from the school district, I helped build a nonprofit educational program for middle and high school children on the spectrum. The program drew students from nine local districts. Within weeks of opening in 2002, the Autistic Strength, Purpose and Independence in Education School, or the ASPIE School as we called it, was already at capacity — 8 students the first year and 16 the second.I read his outbursts as the cry for help that they were. At the end of fifth grade, Elijah became severely depressed. He often refused to go to school and, once there, was repeatedly sent to the school psychologist, who conducted the mandated suicide assessment over and over. Yet none of these professionals gave him ways to confront the challenges that define autism.

Telling statistics:

I should have known that we were onto something when families from across the country began calling the school, wanting to move to our community so their children could enjoy a more positive school experience. It wasn’t just the academic curriculum, although this was designed specifically for children on the spectrum. Teachers supported communication and social skills development in the classroom. Educational staff also empowered students to advocate for themselves in the classroom and outside of school by bolstering students’ knowledge about their disability.

Home truths

Perspectives of a woman and mother with autism. Read more columns »

The need for these kinds of targeted programs and career services has grown enormously. Two decades ago, when Elijah received his diagnosis, just 4 in 10,000 children had an autism diagnosis. Today, according to the U.S. Centers for Disease Control and Prevention, the rate is roughly 1 in 68.

In April, the A.J. Drexel Autism Institute in Philadelphia published the first report documenting the effects of insufficient support for young people like Elijah. The report exposes a dramatic drop off in services, what it terms a “services cliff” that young adults experience as they transition from secondary education into the larger world.

The key findings of the 68-page report read like the story of Elijah’s life, validating what many families know is amiss. The findings also quantify the implications of systemically ineffective planning for the transition to adulthood and reveal the hardships young adults face as they make their first, fledgling attempts to negotiate life after school.

Like Elijah, roughly half of his peers are bullied in school. Only 58 percent had a transition plan in place by the federally mandated age of 16. (Even though I was working in the field, Elijah never had an adequate plan at any age from the public school.)

Approximately one in four young adults on the autism spectrum, my son included, receive no services that could help them become employed, continue their education or live independently. More than one-third are “disconnected during their early 20s,” the researchers found, meaning they never get a job or continue education after high school. Elijah experienced this same isolation in his early 20s.

The biggest deterrent to developing evidence-based programs for people with autism is the lack of available data. “Our situation is like driving a car through the fog with no dashboard,” says Paul Shattuck, director of the institute’s Life Course Outcomes Program.

Looking forward:

As hard as our struggles have been, it is my nature to be hopeful about the future. I hope that the alarming results from the report will lead to more productive solutions.

Some organizations have already begun establishing programs that use evidence-based methods to anticipate the needs of young people transitioning into adulthood.

For example, Phoenix-based First Place Arizona creates and assesses solutions for employment, postsecondary education and living arrangements for adults with autism and other disorders. Ascendigo, Inc. of Carbondale, Colorado, is another progressive solution, offering varied challenges in outdoor education and sports for adults with autism.

The Drexel Institute is embarking on a project that will examine how various groups within the autism community — adult service providers, researchers and people with autism themselves — think about outcomes. “How measures are applied is all over the map,” says Anne Roux, who led the institute’s report, “most often with no input from adults themselves, families or communities.”

People with autism are also serving as their own change agents. The Autistic Global Initiative, a program I direct for the nonprofit Autism Research Institute, is made up entirely of adults with autism working in the disability, medical, advocacy and education fields. The initiative develops training programs and provides advice to organizations from the very people they aim to help.

Three years after I started the ASPIE School, a budget crisis at the partner school forced our program to close. Elijah moved to a private school and later, at age 20, worked hard to complete his high school equivalency. He diligently sought employment and worked at small jobs for brief periods, completing a few community college courses and earning mostly As and Bs.

As he celebrated his 25th birthday last month, Elijah also marked his first full year of part-time employment clearing tables at a restaurant in Woodstock. He rents a studio apartment and makes ends meet on modest paychecks and social security income. He calls me every few days, often to share stories about his coworkers — who value his sense of humor and work ethic — or to solve some problem he’s grappling with. As he takes on more responsibility at work, for example, he’s trying to figure out how to ask his boss for a raise.

Elijah and his peers with autism have always been overachievers working against great societal odds. Now we have the national indicators report as proof of that perspective. It’s up to schools and publicly funded agencies that support people with disabilities to take this information as a call to action and to begin directing young people with autism toward employment, community engagement and fulfilling lives.

Originally published on Spectrum

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How to help young adults with autism transition to adulthood

Listen to this story: https://webplayer.spokenlayer.net/0.1/webplayer.js

 
Listen to this story on iTunes, Spotify, iHeartRadio and Google Play, or with Alexa or Google Home. Ask for ‘Spectrum Autism Research’ For the past 20 years, my colleagues and I have run a social-skills group for children with autism, ages 5 to 18 years. Our program teaches the children how to recognize their own emotions, have conversations, solve problems and build genuine friendships. About five years ago, some of those who had finished the program reached out to us for help navigating the adult world. They were concerned about the challenges involved in attending college, picking a career path, succeeding in the workplace, living independently and forming social and romantic relationships. There were few resources available to them. Adults with autism report poorer social and vocational outcomes than any other disability group1,2. They often don’t earn a living wage, have a partner or family, or participate in the community. They also frequently contend with physical and mental health problems. My colleagues and I wanted to help these young people. We created a curriculum for young adults with autism that helps them to better manage the stress and challenges associated with the transition to adulthood. It also teaches their parents and other helpers how to assist them in learning and implementing skills. We first analyzed the literature on interventions used in adults with schizophrenia, who have similar problems adapting to the demands of adult life. Based on those, we developed a 20-week program for young adults with autism. The program combines an age-appropriate version of our social-skills curriculum with a unit called Functional Adaptive Skills Training, developed at the University of California, Los Angeles, that teaches social, organizational and other daily-living skills in a group format3. Our pilot trial included 13 participants with autism aged 18 to 24, with no control group. Parents of the participants also met weekly to discuss their adult child’s difficulties and attended lectures about adult services. Our unpublished results suggest that the young adults and their parents had high levels of satisfaction with the training. The participants also reported an improvement in their planning and organizing skills, and some relief from depression.

Version 2.0:

My team and our collaborators have also developed a second-generation program that includes modules on handling stress and developing coping skills. The goal is to prevent young adults from avoiding situations — a behavior we believe accounts for the discouraging statistics on social and vocational outcomes. Our 20-week program, ACCESS, includes groups for both young autistic adults and their ‘social coaches,’ such as parents and partners. The curricula and assignments are designed to give these dyads opportunities to interact in a mature, egalitarian and collaborative way. Four introductory lessons teach foundational concepts, such as understanding different social circles, the idea that social behavior differs based on context and that adults relate to family members, friends and bosses in different ways. The lessons also include active listening and giving and receiving feedback. The second module consists of six lessons that teach techniques based on principles of cognitive behavioral therapy (CBT) for dealing with negative feelings and engaging in uncomfortable situations instead of avoiding them. The third module includes five lessons designed to help participants better understand and build relationships with friends and to clarify that the rules for relating to friends are different than those used when relating to a boss or parent, again using CBT techniques to engage instead of avoid. The last four lessons center on the workplace. They focus on adopting a ‘can-do’ attitude, being aware of social circles involving colleagues and bosses, and giving and receiving feedback on the job. Participants also are required to have some form of paid or volunteer job, and to complete weekly assignments with their social coaches. We conducted a trial of the program using participants on the waiting list as a control group. Our analysis included 41 people, aged 18 to 38 years, who have a verified autism diagnosis and an intelligence quotient greater than 704. Participants were randomized to our intervention or to a treatment-as-usual control group. People in the latter group received the intervention six months after the trial. We assessed participants and social coaches, using questionnaires to measure social and adaptive functioning, self-determination, self-efficacy and anxiety.

Lessons learned:

The results of the trial were modest but encouraging. Although participants did not report a decline in anxiety, their global adaptive functioning improved, according to their social coaches. The improvements were driven by gains in home living skills, such as taking responsibility for cleaning, property maintenance, food preparation and other household chores. The social coaches also reported improved communication and self-direction, as well as self-determination skills such as goal-setting, planning and self-advocacy. The participants reported greater confidence in their ability to ask for social support from family, and even friends, in times of stress. As before, their satisfaction with the intervention was extremely high. The trial taught us important lessons. First, although it is never too early to help people with autism develop the adaptive, social, vocational and self-determination skills they will need in adult life, some of these skills may need to be relearned at key transition periods. Many of our participants had been members of our child and adolescent social-skills groups, but they needed to learn to adapt the skills for adult contexts. Similarly, many of the parent social coaches remarked that as their children became young adults, they needed to retool their skills as advocates, given the dramatic changes to the service network. Second, we found that 20 weeks is not enough to teach about adult life. We frequently joked that any group of lessons could be expanded into its own curriculum. Third, the participants reported that the most valuable components of the program are learning about the work environment, learning organizational skills and coming to appreciate how they engaged in distorted, and typically negative, thinking about their own strengths and challenges. We also marveled at how the parents in our study navigated the balance between enabling independence and ensuring the safety of their adult children. For example, one of the parents in our group allowed her son to travel alone to New York City to visit a friend. This experience made him feel strong and independent and eased his depression. Helping parents safely allow their children to be more independent has the potential to be an important new area for research. This year, we are continuing to offer the program on a fee-for-service basis. We hope to eventually write and publish a manual for an intervention that could be used more widely for young autistic adults anywhere. Marjorie Solomon is professor of psychiatry at the MIND Institute at the University of California, Davis.
References:
  1. Baldwin S. et al. J. Autism Dev. Disord. 44, 2440-2449 (2014) PubMed
  2. Taylor J.L. and M.R. Mailick Dev. Psychol. 50, 699-708 (2014) PubMed
  3. Patterson T.L. et al. Schizophr. Res. 86, 291-299 (2006) PubMed
  4. Oswald T.M. et al. J. Autism Dev. Disord. 48, 1742-1760 (2018) PubMed

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