DAY 29 ~ April Is Autism Awareness Month

DAY 29

​In closing of April Is Autism Awareness Month, let's take another look at those who have gone before us. PREVIOUS Autism Awareness Month, from www.sarasautismsite.com website ARCHIVES ~ (R-hand side of Lates BLOG Posting, under Author Information.) 

Archives of previous 'April Is Autism Awareness Month'  BLOGs  –  
​4/8/2020, 4/25/2021, 4/10/2022, 4/26/2023

4/8/2021  Luker, S. (2024) Archive Excerpt

Luker, S. (2024). Excerpt from ~ UNIT 6 CH 5 – Where to Look for Resources
CHAPTER 5 – FUTURE CHALLENGES; College, Career, Forty Something, Geriatrics.

COLLEGE

The ‘young adult’ with autism will often need support to be successful in his or her future challenges.
 
The Autism core ‘cognitive’, ‘social’ and ‘sensory’ difficulties from childhood won’t disappear when adulthood arrives. Often acting childishly will also remain. Looking like a ‘child’ is the only thing that disappears with age.
 
Carpenter, S. (2015) cautions 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 the following major remaining challenges of autism, into adulthood –

• Remembering & following instructions
• Adapting to changes & generalizing
• Planning & organizing
• Interpreting body language & facial expressions
• Making small talk & socializing
• Following unspoken social rules & expectations

Carpenter (2015) continues – social difficulties may frustrate college and career ambitions. And, in some regional areas, only the most severely disabled people are eligible for support or assistance, such as Medicaid-funded services.
 
Gardner, N. (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!
 
Heading off to college, 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.” 
 
Throughout life, those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion in the literature has been that the designers of supported environments and educational settings find ways to compartmentalize and label tasks or operations, for persons with autism. For instance, incorporate more easily identified blocks time, areas of space, and/or use of specific tools/technology to support the adolescent and/or young adult, or adult with autism meet the challenges of their tasks.

Bowler, et al. (2015) tell us that the difference between ‘supported’ and ‘unsupported’ tasks was revealed in their study. Participants with autism found that having the ‘support’ of seeing things in a specific order, as with an organizational chart or by being given auditory cues, helped them become more effective. Having that type of support improved recognition as to the order of events or sequence.

They went on to say that those with autism have different degrees of difficulties with memory and may 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 of persons with autism should be a result of spending time understanding and unpacking and clarifying the complexity of the task. These are reasonable adjustments required by most students and/or employees with autism, in order to become successful.
​
< My Thoughts >      “To make reasonable adjustments…”

When a student has a disability, which impacts upon learning college curriculum or when learning a new job, then there may be a requirement to undertake reasonable adjustments. These reasonable adjustments would help student performance, or addresses employee needs, allowing for the individual’s strengths and abilities of the persons with autism to surface.
 
Help from academia and from employers for persons with autism could come by –

• providing necessary tutoring, technology, reframing, or retraining 
• offering alternative tasks or assignments
• insuring longer supported training or length of assignment periods
• allowing more time off for rehabilitation, as needed
• permitting additional breaks, as needed
• changing inaccessible areas, or redesigning an area, as needed
• relocating work/study areas to address sensory, or other needs

 
Wentz, E., Nyden, A., et al. (2012) explored the idea of using technology to help support adolescents and young adults with Attention Deficit Hyperactivity Disorder (ADHD) and autism disorders, in employment and educational settings. The idea was based on the concept that it could 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.
 
< My Thoughts >      “…using technology to help support…”
 
Here is a LINK to what appears to be a very recent collection of technology support tools used to train or retrain persons with disabilities, including autism – “New resources & hidden gems from the NationAl Rehabilitation Information Center (NARIC) Collection. A Quick Look at the Research, a ‘Spotlight’ collection –
https://naricspotlight.wordpress.com/2021/04/07/autism-and-technology-for-independence-a-quick-look-at-the-research/

Disclaimer: Please note that I, Sara Luker do NOT have any connection with, nor am I a representative of the National Rehabilitation Information Center (NARIC). This LINK is offered only as an opportunity to begin to seek information of interest, regarding the use of technology for support to persons with disabilities.
 
Continuing, Wentz (2012) believes that because the traditional ‘face-to-face’ communication is difficult for most individuals with autism, a computer-mediated communication from one’s residence was thought to be an easier facilitation of support. The coaches available during this time period included clinical psychologists or educational therapists with the common denominator of having vast experience with this Autism Spectrum Disorder (ASD) population.
 
Jones, S. R. (2016) insists that it’s clearly 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.
​
Staff Writer (2018) states that so much is riding on the future, so that an autistic adult can live independently. That the time is now for gathering information, discussing possibilities, and to start working towards milestones for independence.

REFERENCES:
 
Bowler, D. Galgg, S., et al. (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. (2016). The ABCs of Autism Acceptance; eBook 2016 Edition.

Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com
 
Staff writer (2018). Are There Ways An Autistic Adult Can Live Independently?; Retrieved online from – https://ecarevault.com/2018/01/autistic-adults-can-live-independently/
 
Wentz, E., Nyden, A., et al. (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.

​

Take me out to the ‘alternative’ ballgame – Taylor Duncan (2019) organized Alternative Baseball.

4/25/2021  Luker, S. (2024) Archive Excerpt
 
Commissioner of Alternative Baseball diagnosed with autism at the age of 4, Taylor Duncan (2019) loved baseball. But, it seems that the game didn’t love him; at least NOT traditional, organized baseball. Due to his autism, coaches were afraid he would be hurt. He turned to a local church league that played ‘slowpitch’ softball. Taylor wanted to be the best he could be, but even with all the practicing of mechanics and skills, most times he was sidetracked to the bench. Deciding to turn his disappointments into a dream of being on a baseball team, he established his own team. 

Yahr (2021) tells us to ‘bring your glove and get on the field’. She writes that players can be of any or no experience to participate in Alternative Baseball. There are opportunities for boys and girls, teens and adults (ages 15+) to play traditional baseball, judgment free.
 
< My Thoughts >   “…‘bring your glove and get on the field’…”
 
Our Sonny enjoyed a brief season ‘playing’ Challenger Little League, as a youth. The team had community sponsors who provided equipment, uniforms, and made baseball cards for the each team. Taylor Duncan’s Alternative Baseball seems like the next step. Look for a team near you. Or, start your own!
 
REFERENCES:
 
Duncan, T. (2019).  Commissioner – Alternative Baseball; Retrieved online from –  https://www.alternativebaseball.org/
 
Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com
 
Yahr, N. (2021). Bring Your Glove & Get on the Field: A baseball league for people with autism & disabilities is on deck for Madison; Retrieved online from –  https://madison.com/ct/news/local/neighborhoods/

​4/10/2022  Luker, S. (2024) Archive Excerpt

Jones, S. R. (2016)  1%  I am an Autistic adult, so all those messages of despair are about me and people like me. I hear the terrible things that are said about Autism and those of us who are Autistic and I have to wonder if the people saying those things believe we don’t have feelings. Or maybe they think we’re too far gone to ever hear what they’re saying about us. But they are wrong.
 
3%       Often, I hear people rejecting the notion of Autism acceptance because they are mistaken about what it actually is. They think it means giving up and doing nothing to make a person’s life better. They think of it as sinking beneath the waves and drowning.
 
Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not.
 
38%     K is for Kids (But Probably Not the Ones You Expected) –
 
Autistic parents have a hard time finding each other. They have a hard time finding information about their own situation. Lots of Autistic parents are keeping a low profile if they are able to pass as non-autistic folks. There is a realistic fear of having one’s kids taken away by society. Lots of people are very interested to hear about parenting Autistic children… until they realize that the information is coming from an Autistic adult.
 
It is time to move past awareness and accept the Autistic parents among us, offering encouragement and support. And listening to them. After all… who can you turn to for the truly insider view of raising Autistic children? These are the experts who understand and can explain how to nurture the autistic neurology – they literally know it inside and out.
 
“Acceptance and understanding were common themes when autistic mothers talked about their parenting strengths. ‘It has been a huge benefit to have a shared neurology with my son,’ says one mother. She says that ‘he finds great comfort in the fact that I can understand his need for the routines and stimming that others see as odd.’
 
REFERENCES
 
Jones, S. R. (2016). The ABCs of Autism Acceptance; eBook Edition.

​Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com

​4/26/2023 Luker, S. (2024) Archive Excerpt

​Luker, S. (2024) UNIT 2 – Why Is It Autism?

Consistently, parents were asked, “Who was the first person to mention the possibility of your young child having ASD?” Response was – “the first person was a parent, or other family member, and/or pediatrician.” As compared to children who were later diagnosed at 3-5 years, generally by the child’s pediatrician or classroom teacher.

Concerns with the timing of the diagnosis may determine a choice of starting with a ‘short-term’ intervention, as well as deciding what the family should do to support the child while they waited.

< My Thoughts >          “…while they waited…”

The impact of the symptoms on the child and the family may also be a deciding factor, as to the timing and the nature of the interventions considered; as well as the actions taken while they waited. A ‘short-term’ intervention may be needed immediately, especially if the child is at risk for hurting self, or others.
​
Farmer, J. & Reupert, A. (2013) quote a parent as saying, “I feel as if I now understand what it’s like in my son’s world. I now know what Autism is.” When parents have an explanation of their child’s behavior and possible thinking, they are better able to accept that picture of their child. It’s very important for parents to accept the possibilities and expectations for their children, because treatment and intervention depends greatly on parent reports and observation.
 
< My Thoughts >             “…that picture of their child.”
 
Parents may become convinced that special treatments and/or interventions will ‘cure’ the autism. But, to date there are NO cures, and there are NO specific ‘autism’ blood tests. Real 'data' may be found from assessments, much of which relies on ‘parent reporting’ information on questionnaires; parent responses which are open to interpretation by a technician.
 
To complicate things, the child’s developmental trajectory may take a zig-zagging course over time. Severe symptoms may even seem to abate or disappear periodically. This becomes especially difficult in separating these changes from the results of any therapies the child is engaged in. Sometimes therapy results overlap. And, sometimes it seems as if the ‘picture’ is just never really clear or complete. But, getting an accurate diagnosis is the critical first step towards finding your child’s future independence and wellbeing.
 
References:
 
Farmer, J. & Reupert, A. (2013). Understanding Autism & Understanding My Child with Autism; Australian Journal of Rural Health. Retrieved online from: https://doi.org/10.1111/ajr.12004

​Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com

​4/26/2023  Luker, S. (2024) Archive Excerpt

Excerpt from ~ UNIT 6 CH 5 – Where to Look for Resources; CHAPTER 5 – FUTURE CHALLENGES; College, Career, Forty Something, Geriatrics.

CAREER
 
Many parents of children with autism hope that they will one day become a somewhat ‘normal’ adults with autism.
 
Rudy, L. J. (2018) – What do you mean by normal? A fast-shrinking number of ‘everyday’ people actually have a full-time job with a pension, heterosexual marriage, 2.5 kids, and a mortgaged house in the suburbs.
 
Young adults are moving in with their parents. Older adults are moving in with their children. Homosexual marriage is now the law of the land. Many couples live together without marriage. Jobs are not guaranteed, and pensions are nearly extinct. Virtual jobs, temporary jobs, contracting jobs, and commission jobs are more and more common. So, which form of ‘normal’ might be right for your autistic child?
 
< My Thoughts >              “…which form of ‘normal’…”
 
Today’s ‘new normal’ can be most anything which allows a modicum of happiness and independence. Parents live with their children or other family. Adult children live with their parents after circumstance’s change. Jobs and education both can be ‘brick & mortar’ and/or ‘virtual, in many or most areas in the world. In some cases for an adult in the autistic world this generalization makes it easier, for some more difficult.

Rudy, L. J. (2023) reports that “Parents who have an autistic child commonly wonder if they can lead a "normal" life. If that means being independent and otherwise living like neurotypical people, there is no simple answer. Some have traits of mild autism while others face more challenges and have higher support needs.”

It's helpful to learn about the support programs and available resources in your community. This can include low-cost transportation, meal services, and volunteers willing to help with inclusion in arts programs, sports, or other activities.
 
On the federal level, the agencies providing support include:

• Administration on Intellectual and Developmental Disabilities (AIDD), which focuses on residential support, transportation, transition planning, employment, and respite care
• Division of Vocational Rehabilitation (DVR), a state-administered program that focuses on job counseling, preparation, and training
• Supplemental Security Income (SSI), which may provide financial assistance and Medicaid health coverage to those who qualify

 
Many families also turn to their local religious communities for emotional and spiritual support. Encouraging your child to volunteer in the community or to stay socially connected to other autistic people can also help set the foundation for independent living.”
 
< My Thoughts >              "Adult children..."
     
With today’s diverse workforce and work locations, may more ‘able’ autistic adults find satisfying and fulfilling careers. According to Forbes Magazine (2022) only 32% (usually with Asperger's) are successful. Much depends on another spectrum of factors. Psych Central considers social interactions, sensory processing issues, and learning styles to be among the most important.

My take is that many are ‘underemployed’, but if the person feels important and productive, then that may be okay. Some problems for many may be lack of ‘flexibility’ when it comes to work schedule (time) changes, work increase/decrease, and/or having the support needed when troubles arise. The message here too, is that your ‘child’ with autism will one day become your ‘adult’ with autism; or, as we call Sonny, our ‘adult-child’.

REFERENCE: 

​Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com
 
Rudy, L. Jo (2018). Will your autistic child grow up to lead a normal life?; Updated (2023) in Can Autistic People Live a "Normal" Life?; Retrieved online from: https://www.verywellhealth.com/autistic-child-normal-life-260435
 
End of DAY TWENTY-NINE. 
 
Note: Excerpts from the books – (13% indicates location in the Kindle version of the eBook, instead of page numbers).
 
Sharing of my website and BLOG Comments welcomed. Thank-you to those of you who have sent comments... much appreciated!
 
Regards,
 
Sara Luker