The growing number of young adult autistics of today will soon join the ranks of becoming Middle Aged Autistics of tomorrow.
There is limited research on issues specifically related to middle-aged autistics, as most studies tend to focus on children and adolescents with autism.
Acknowledging the need for knowledge of what happens in this phase, along with the services and supports that will be needed.
Recognizing the transitions that come with adolescence in autism, along with the current inadequacy of needed supports, care and services. Translatable solutions are needed now.
I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication. I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood; tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.
Let me give you an example of 2 peers that I know - one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.
In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood.
Propanaol has come up in lectures in my Cell Neuroscience course this sem. Of personal interest to me, as its use has become prevalent in the autism population. My last set of docs at Stanford said they preferred its use as it has less side effects compared to other drugs. I have mixed feelings about it effectiveness in my case but I've heard its helping a number of other autistics.
The use of Propranolol (brand names - Inderal, Hemangeol, & InnoPran XL) in autism is actually off-label as some research has suggested that propranolol may be helpful with anxiety, social withdrawal and repetitive behaviors. More research is needed to fully understand its effectiveness in autism.
The webinar is up at https://www.youtube.com/watch?v=039eGaw2Q1w
This is one of my responses in the webinar.
About the movie I want to start with a comment. What I absolutely love about this movie was the utter genuineness of autism. And highlighting how others treat autistics is both DARKNESS and HOPE but there is a chance to BELONG.
To give you a perspective on what autism can look like, A little more about myself, On the disability front, I do have significant challenges that present multiple obstacles to my everyday living. Having limited communication skills is just the tip of the iceberg of these issues and I do need constant care for most aspects of daily living. On the other hand, I like to think I also have strengths which have carried me here all the way to graduate school where I hope to do meaningful research that contributes to knowledge and solutions in the autism space.
I happen to straddle aspects of two often seeming disparate worlds. So I will go to the HEART OF THE DEBATE.
It troubles me that there is such a divide between both worlds, when I think ultimately both worlds often have the same long term objective. I often feel we are wasting time and resources arguing with each other instead of getting real work done.
I don't think it's an either-or situation. That it has to be this model or it has to be that model, with no room for negotiation in between. That it is a pure Medical Model which says the solution lies in medicine alone or a pure Social Model which says society has to accept and accommodate us and nothing more needs to be done.
I agree that all of us need and yearn for that ULTIMATE GOAL OF BELONGING, like what we saw Donald Triplett was living and experiencing with his community in the movie. That is what the Social Model is. That is indeed the ultimate dream.
But do you think that same community would be as accepting and inclusive of an autistic adult who had constant meltdowns, who was displaying self-injurious behaviors, who had significant social anxiety and a range of health issues to boot. Guess who is left holding the baby, so to speak. It comes down again and again to the family to cope and manage the best they can in terms of finances, resources and time. No wonder those families ask, what after us.
Believe me, life is far from a happy optimistic picture for not just the families but for these autistics too. Even providers don’t want to work with us, let alone society. I have peers stuck at home because no adult day program will take them due to behaviors. Group housing does not want the adults with behaviors. So where do they go? I have peers who can have a dozen seizures a day. I have peers who have to be on the toilet all night due to gut problems. Sleep for just 2 hours a day means both the autistic and family are sleep-deprived. And this stuff does not magic away in adulthood. Providers just get harder to find as you age, as everyone wants an easy case. I’ve had providers quit on me after just 2 days. The happy life of Donald Triplett will slip further and further away.
I want and yearn for belonging but I’m also beginning to realize that perhaps there are some missing steps, almost like accommodations to how to help adults and kids with more significant challenges. Maybe those solutions lie in understanding physiology and in underlying health and medical issues.
Unfortunately any movement towards those solutions is deemed as the evil medical model and therefore taboo, which is very frustrating. We are conflating health issues with cure. We are getting sidetracked honestly with this debate. I don’t think anyone deserves to be engaged in self injurious behaviors and be experiencing extreme mood swings which make inclusion almost a non starter. No one deserves to wake up in intense gut pain like me in my younger days and have it be thought of as something that can only be addressed with behavior therapy. And when behavior therapy does not work, because you are looking at the wrong thing, you are pushed into an even worse special education classroom as then you are deemed in capable of improvement and inclusion. Any dream of belonging goes up in smoke.
If your body internally feels better, and you have less health issues it will reflect in outward happiness and a better quality of life. What’s wrong with finding solutions? What’s wrong with looking for solutions on multiple fronts. We can all agree our environment has gotten more toxic and it is causing more and more significant health issues world-wide. Maybe some of our solutions are somewhere in that arena. Just medicating us with psychotropics can’t be the only solution, which also have their own long term health effects. Proactively taking care of your health and well being is not pathologising. We have to research solutions, so that guys like me and others with more significant issues can also dream of moving about in society with ease, and have a chance at opportunities and belonging like Donald Triplett.
At the same time I am so incredibly amazed by the strengths and possibilities I see in the autistics who are able to get out there in society and be able to avail of opportunities. There is so much unlocked TALENT and potential which can bring about significant changes in the world. It is very critical for autism to also be looked at from a STRENGTHS-BASED perspective for that acceptance, inclusion and belonging piece.
In fact, I would like to see this TALENT HARNESSED IN FINDING SOLUTIONS for the ones with more significant issues, so they too have the opportunity of inclusion and belonging. Solutions lie in many fronts, from medical research to policy to societal attitudes to caregiving issues to inclusion. We also help solve the unemployment problem this way by making everyone across the spectrum, especially those who have the desire to work, become part of the solution for all. So it can be a win win for all.
I also want to point out to a Sins Invalid principle of Disability Justice which says when you address the needs of the most marginalized, you address the needs of all. In fact I would point out that I admire that Donald Triplett is a healthy active senior but I doubt if many of us will be as healthy. Current research seems to point to a lot of health issues we are going to have as aging seniors. If you get a chance read Alice Wong's piece on caregiving for her recent health crisis. Isn’t it better to find solutions on both health issues and caregiving now when we are able to do something about it rather than when we are all tottering senior citizens. So I want every autistic and family member and ally to think about how they can be part of the solution.
So it's almost like we have different degrees of needs and some of us have legs in many issues so we need solutions on many fronts. Why then are we having factions and fighting?
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Our Guy Donald
Autism Diagnosis in Minority Communities
"In 1990, only 3 percent of Americans said they had no close friends; in 2021, nearly 12 percent said the same. The United States is in the grips of a loneliness crisis that predates the Covid pandemic."
https://www.nytimes.com/2022/10/01/well/live/how-to-make-friends-adult.html
If this is state for NTs, imagine the situation for autistics who generally have little - no friends through childhood.
However, some of the suggested ways to making friends is hardly the easiest for autistics either - "You really have to try and put yourself out there."
I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.
I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.
This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.
Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.
Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.
Parents, Yours is truly a dedication of a lifetime. Thank you.
Photos sent by Chad, one of my first therapists. Age 3-4. I was so tiny when I started therapy.
I was Keynote Speaker
https://familiestogetherinc.org/2021twcl/#hari
I was keynote speaker at Missouri State 2021 Transition Training Institute
https://dese.mo.gov/special-education/effective-practices/postsecondary-transition
https://www.eventsquid.com/event.cfm?id=12567
List of all Speakers: https://www.eventsquid.com/event.cfm?id=12567
Event by ABLE-South Carolina
Recording at https://youtu.be/O4sd30F_9bk I'm on at 2:16:51
Event Site: https://unlockingbarriers-sc.org/?fbclid=IwAR19-TeohFuvq2rnxLdCVObxGe1l8l5doQ0WT4s-upGSbSuf1cC-C_hCmb4#:~:text=Save%20the%20date%20for%20April,responsible%20as%20the%20pandemic%20continues
I was the keynote speaker at the ABLE - South Carolina, a Center for Independent Living at their Annual conference. www.able-sc.org
Empowering a Future is a professional development opportunity for
educators and service providers working with youth with disabilities who
are transitioning to adulthood. This year’s conference will include all
the exciting sessions you’re used to – but in a user-friendly online
format! Want to learn how to motivate and empower your students? It’s
time to leave the deficits-based approaches behind and focus on new
strategies to build strong, successful self-advocates. Session content
will highlight virtual service delivery, supported decision-making,
pre-employment transition services, youth leadership, and much more. This event is made possible through a partnership with Able South
Carolina, South Carolina Department of Education, and Transition
Alliance of South Carolina (TASC).
Link to any potential recording will be posted if available.
