Jones (2013) relates that researchers are only beginning to really look at autistic adults in any number. Even though the first people diagnosed with autism are in their 70’s and 80’s now.
Sicile-Kira, C. (2014) “…the adult with ASD needs to develop strategies to be a good employee…good coaches will be needed to help put strategies in place to help those with inappropriate behaviors learn to keep them in the workplace.”
“Some people on the more able end of the spectrum have found the college or university environment a comfortable place for them to learn and even work.”
Now there are so many opportunities to get an education by combining ‘brick & mortar’ and an ‘online’ settings to achieve various degrees.
“Regardless of the ability level of the individual, the person’s own preferences should be taken into account, and there are ways of trying to figure out what is important to even the least communicative of individuals.”
Jones (2013) continues, if you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us.
< My Thoughts > “stop only valuing those adult Autistics who inspire you and instead value all of us.”
We tolerate so much in our society, bad neighbors, bad drivers, bad language… why can’t we embrace that community of people who are trying so hard to contribute to our lives and bring purpose to theirs?
Carpenter (2015) tells us that more than half of young adults with autism are disengaged from both employment and education two years after leaving high school. He believes it is because of their major challenges, as follows:
< My Thoughts > “…major challenges.” “I have never been able to keep a job…”
Social and sensory difficulties from childhood don’t disappear when adulthood arrives. Childhood is NOT the only thing that disappears.
Carpenter continues, social difficulties may frustrate college and career ambitions. And, in some states, only the more severely disabled people are eligible for assistance, such as Medicaid-funded services.
Sicile-Kira, C. (2014) “…the adult with ASD needs to develop strategies to be a good employee…good coaches will be needed to help put strategies in place to help those with inappropriate behaviors learn to keep them in the workplace.”
“Some people on the more able end of the spectrum have found the college or university environment a comfortable place for them to learn and even work.”
Now there are so many opportunities to get an education by combining ‘brick & mortar’ and an ‘online’ settings to achieve various degrees.
“Regardless of the ability level of the individual, the person’s own preferences should be taken into account, and there are ways of trying to figure out what is important to even the least communicative of individuals.”
Jones (2013) continues, if you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us.
< My Thoughts > “stop only valuing those adult Autistics who inspire you and instead value all of us.”
We tolerate so much in our society, bad neighbors, bad drivers, bad language… why can’t we embrace that community of people who are trying so hard to contribute to our lives and bring purpose to theirs?
Carpenter (2015) tells us that more than half of young adults with autism are disengaged from both employment and education two years after leaving high school. He believes it is because of their major challenges, as follows:
- Remembering & following instructions
- Adapting to changes
- Planning & organizing
- Interpreting body language & facial expressions
- Making small talk
- Following unspoken social rules
< My Thoughts > “…major challenges.” “I have never been able to keep a job…”
Social and sensory difficulties from childhood don’t disappear when adulthood arrives. Childhood is NOT the only thing that disappears.
Carpenter continues, social difficulties may frustrate college and career ambitions. And, in some states, only the more severely disabled people are eligible for assistance, such as Medicaid-funded services.
Gardner (2013) marvels, I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.
With daughter Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.
“Dale needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.”
< My Thoughts > “Dale needs an awful lot of support and direction.”
Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.
They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task.
That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.
Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.
< My Thoughts > “…Tourette’s Syndrome.”
Retrieved from: www.cedars-sinai.edu Tourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.
“Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”
“Dale, go to Glynhill – just to get your progress reports. I guarantee, you will NOT be going back to college or Glynhill until we meet with your trainer to sort this mess out!”
What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?
What we found out was that they thought Dale was not working at a satisfactory level. It wasn’t Dale’s failure, but the college’s failure: To make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.
A few days later, an upbeat Dale casually mentioned a strange quirk of fate. Joyce, his trainer from fifteen years ago, was newly qualified to work at the nursery. She could see how far he had come. Her ability to evaluate Dale’s practical tasks, both constructively and with respect for his autism, allowed him to learn and to grow in confidence.
Dale thrived under the new plan, plus some unanticipated “additional support”.
The first apology we received was lost on us. “We didn’t think anyone would have taken the job.” All the director’s energies were directed at defending his staff. A few days later, we received a letter confirming an action plan, which would allow Dale to complete his course. Dale would have access to the College Supported Learning Department. They agreed to make reasonable adjustments, and to ensure inclusion.
< My Thoughts > “To make reasonable adjustments…”
If there is an indication that a student may have a disability that is impacting on their studies, there may be the requirement to undertake reasonable adjustments. Reasonable adjustments also addresses employee needs, allowing for the individual’s strengths and abilities; plus providing –
- retraining or offering alternative tasks
- longer supported training periods
- more time off for rehabilitation, as needed
- additional breaks, as needed
- changing inaccessible areas, as needed
- relocating work area to address sensory needs
Wentz, et al. (2012) explored the idea of using technology to help support adolescents and young adults with ADHD and autism disorders, in employment and educational settings. The idea was based on the concept that it would be easier to get additional support from a coach in an online ‘Chat Room’ setting which could be accessed during the day between the hours of 2 – 4pm.
Because the traditional ‘face-to-face’ communication is difficult for most individuals, a computer-mediated communication from one’s home was thought to be an easier facilitation of support. The coaches available during this time period were either clinical psychologists or educational therapists with the common denominator of having vast experience with this population.
The participants could also fill out a survey to help them more clearly define the problem they needed help with. For instance, they could answer ‘yes’ or ‘no’ or rate the problem from a high 10 to a low 1. Some of the choices were. “Did you know enough today to help you with your difficulties?” “Did you feel prepared today?” “Does your coach recognize and respond to you when you are having a problem?” “How did you feel today when demands were being put upon you?”
Wentz continues saying that some of the problems with this form of support were voiced from the participants, such as – Don’t always have access to the computer during the timeframe of 2 – 4pm. Others said that no significant improvement in ‘quality of life’ was achieved for several weeks (not immediate enough). There were those who wished they could talk to the same ‘coach’ instead of possibly getting a different one each time.
Several said that they didn’t know enough about their ‘difficulty’ to express themselves clearly to the coach; that the questionnaire didn’t provide a way to identify the problem to their satisfaction. At the end of the program though, most felt they had greater self-esteem because of the chat room experience.
This was not a luxury but a ‘right’. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.
Joyce’s input was life-changing. Now, with benefits in place, and with her support, Dale had a decent income for college. The next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.
Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.
Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.
Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or NO autism!
Jones (2016) shares, “My goal was to write something every day in April (Autism Awareness Month), working my way through the alphabet as I talked about ways to understand and accept us better.”
P is for Poverty –
So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.
We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs, for example special diets are expensive enough that a living wage for a non-disabled person is NOT a living wage for some of us.
I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.
I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce.
But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
We have a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism. Vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.
< My Thoughts > “I want people to understand how easy it is for Autistic adults to end up homeless.”
Recent studies show that 12 – 15% of the homeless worldwide have autism.
Bennett (2016) wants people to know that there less known about how those with undiagnosed ASD presented in adults. Another problem of concern is about other critical living conditions such as living with aging parents on living on the street.
He suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable citizens to receive a correct diagnosis, including senior citizens. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions, especially for seniors with autism.
So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.
We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs, for example special diets are expensive enough that a living wage for a non-disabled person is NOT a living wage for some of us.
I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.
I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce.
But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
We have a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism. Vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.
< My Thoughts > “I want people to understand how easy it is for Autistic adults to end up homeless.”
Recent studies show that 12 – 15% of the homeless worldwide have autism.
Bennett (2016) wants people to know that there less known about how those with undiagnosed ASD presented in adults. Another problem of concern is about other critical living conditions such as living with aging parents on living on the street.
He suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable citizens to receive a correct diagnosis, including senior citizens. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions, especially for seniors with autism.
Sullivan, et al. (2012) found that families with an autistic child often need grandparent involvement. Involvement for support with caring, transportation to appointments, as well as for financial back-up. Grandparents were also found to help the family with the acceptance of children with disabilities, contributing positive attitudes and often serving as a parenting and teaching model.
There are many out there who have taken on this role. Then there is that population of aging parents and grandparents, who are themselves on the spectrum, many undiagnosed. Whichever senior category one fits into, there certainly are NOT enough supports and services to adequately help make life a little easier.
REFERENCES used here are:
Bennett, M. (2016). “What is Life Like in the Twilight Years?” A Letter About the Scant Amount of Literature on the Elderly with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.1883 – 1884.
Bowler, D., Galgg, S., Gardiner, J. (2015). Brief Report: The Role of Task Support in the Spatial and Temporal Source Memory of Adults with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V45, p.2613 - 2317.
Carpenter, S. (2015). Learning Through Seeing & Doing; Science News, p18-20.
Gardner, N. (2013). All Because of Henry; eBook Edition.
Jones, S.R. (2013). No You Don’t – Essays from an Unstrange Mind; eBook Edition.
Jones, S.R. (2016). The ABCs of Autism Acceptance; eBook 2016 Edition.
Sicile-Kira (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Sullivan, A., Winograd, G., Verkuilen, J., et al. (2012). Children of the Autism Spectrum: Grandmother Involvement and Family Functioning; Journal of Applied Research in Intellectual Disabilities; v24, p484-494.
Wentz, E., Nyden, A., Krevers, B. (2012). Development of an Internet-based Support and Coaching Model for Adolescents and Young Adults with ADHD and ASD; a pilot study; Journal of Early Child & Adolescent Psychiatry; V:21, p611-622.
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