Why we need research about autism and ageing

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Editorial fron Sage Publications

We do indeed need research in that area, and the basic research hardly been attempted, the secondary stage of applied research is non-existent. At least the Brits have done a preliminary incidence study - which found that the percentage of AS in the general adult population was the same percentage derived from childhood studies. So ASD's don't "go away" over time. The USA - for all the millions and millions of dollars - an astonishing amount in total - has NOT EVEN DONE THIS MOST BASIC OF STUDIES. That speaks volumes about attitudes, power structures, political agendas and ruling paradigms.

While agree about the necessity for such studies, the weakness of that editorial for me was that the writer is equating ASD with lifelong dependency on others. Many of us live independent lives even in old age (I'm one of them) and have a safety net of adult children in some cases, (hey, just like some NTs do!) who care enough about us to provide the support that age itself sometimes dictates, whether NT or ND.

Currently I am very wearied by the deficit-only discourse, and how pervasive it is. It's disquieting to me to see it where I least expect to so often.

I've been fairly lucky that my health has been fairly robust as I get older. The biggest hang up I've had was last summer when I herniated a disc in my back that left me hobbled for about 2 months, but I am getting over it and I don't think I will need surgery.

But it's still a scary thought knowing my life expectancy is the mid 50's for someone like me according to that Swedish study.

A study like that needs to be done here state side.

The state of research the USA is still very rudimentary. There are lots and lots of studies on causes of autism, researching genetics, environmental factors, age of parents, etc. etc. but very little into anything that might be of any use to any autistic alive today, such as effective behavioral therapies for children and adults (that aren't abusive); occupational therapy; managing sensory disorders and gastric issues; social programs such as transitioning to adulthood; adult living with full, partial, or minimal support; suicide prevention; prevention of murder by parents; family counseling and respite care; safety from sexual assault; counseling for autistics with children; marital counseling for married autistics; job coaching; financial planning for retirement, and so on.

The US model of autistics is that of children who will continue to require full support into adulthood, but that's not the case for everyone. It also only envisions autistics with intellectual disability who can, at best, only be employed in specialty programs like Melwood or Specialisterne. Anybody who falls outside of that image is ignored or dismissed by big name charities and health care providers. I've been told, to my face, that I couldn't be autistic because I had a job, a spouse, and didn't talk strangely. Well, duh, I had two years of speech class, 30 years of therapy, and 50 years to master eye contact and facial expressions. I also had long periods of unemployment, and the spouse is not NT either. That doesn't mean I'm not a quivering mass of anxiety most of the time, or that I need no help.

Even finding support through insurance is nearly impossible. Most therapists with experience in ASD either don't take any insurance or they are booked for months, or they only take people under 22, who presumably need help the most. I hear of British people getting referrals with their diagnoses. I got nothing. I've been very frustrated with the lack of resources and help here.

It has been decided that one behavorial tharapy ABA is the "gold standard", no need to look at alternatives. If you do not like it you do not have much studies to back you up. A catch 22 situation. Ignoring the important question of if the desired result should be the desired result, thier evidence based studies conclude if the amount of ABA is decreased the result is less then desired, if treatments are ended the desired results often go away. Another words the "gold standard" is a costly and time consuming band aid. That is one specific example of the consequences of your excellent broad based critism of American Autism priorities.

Thanks! This leads to my other beef about support for autistic people and the poor quality of science in psychology in general, which has led to a lot of abusive therapies and public policies regarding autistic people, especially those who are intellectually challenged, nonverbal, or just generally acting "different." A lot of therapies like ABA or institutionalization to separate autistic children from emotionally distant, harmful mothers are the direct results of psychologic theories like behavior modification and psychoanalytical theories such as the refrigerator mother and autism as pre-schizophrenia. These theories held sway for decades, with virtually no scientific studies or verification (e.g., did autistic kids grow into schizophrenics? Were their mothers really cold? Is ABA effective in the long term, or does it require constant reinforcement? what are the long-term effects of these treatments?) Much of psychology read the same--lots of treatments based on untested theories.

The lack of support or effective treatment has also led to a cottage industry of quack treatments to fill the gap, mostly very expensive, not covered by insurance, and either unhelpful or even harmful. These are entirely unregulated and unproven: fad diets, chelation, New Age therapies, facilitated communication, etc. etc. etc.

It really puzzles me why there is such an antipathy toward supporting research on treatment and management of mental disorders or neurological differences--the amount of productivity lost for people that could be contributing members of society, the cost of secondary illnesses such as depression and substance abuse, plus the money lost by families trying to find their loved ones treatment, is huge.

The italicized excerpt below is from this article published in full on Pubmed: The Investigation and Differential Diagnosis of Asperger Syndrome in Adults


Subtitle: Particularities of patients with a late diagnosis of Asperger syndrome

In the author’s specialized outpatient clinic for ASD in adulthood, 90% of the patients referred with a late diagnosis of ASD meet the clinical criteria for AS (19). A possible reason for the delay in the diagnosis of AS, aside from the relatively “mild” manifestations of autism in this disorder, may be found in the affected persons’ highly effective social and cognitive compensation. They are usually of high-average or above-average intelligence and can often cover up their deficits of social communication and interaction to some extent by means of cognitive learning processes, with the development and formulaic “overlearning” of explicit situational rules (“model learning”) (20, 21). Affected persons with high verbal competence and introspective ability may achieve a comparatively high level of psychosocial functioning that often appears unremarkable, at least on the surface. Studies have shown that 50% to 80% of persons with AS live independently, up to 80% have completed higher education, and half report intimate interpersonal relationships (6, 19, 22). Such high functioning requires an ever-greater adaptation of autistic cognitive and behavioral structures to an increasingly complex social environment (23). Typically, non-intuitive compensatory strategies succeed up to a point and then finally fail, because of their excessive rigidity, in threshold-crossing situations such as moving out of the parental household, starting occupational training, taking a first job, changing one’s occupation, or trying to start an intimate relationship. In consequence, up to 70% of the affected persons develop comorbid disturbances, mainly anxiety disorders and depression (5, 6,19). If they then seek medical help, the manifestations of these secondary disturbances may camouflage autistic experiences and behavior, leading to difficulties in both differential diagnosis and treatment (24, 25).


I think this is a Dutch study, so it may be free of the Autism Speaks political agenda which seems to fund/infect so many USA studies.

Wow, B19, that sounds like an amazing study. It seems like a lot of the good research on autism is coming out of someplace...not the United States, such as Europe, New Zealand, Australia, and Canada. I've not heard much about research coming out of Asia, Latin America, or Africa. I am holding onto a glimmer of hope that Hillary Clinton will come through on her promises to broaden support and research on autism, but even thought it sounds like a great improvement, it still seems to leave the over-30 population mostly out in the cold, especially the very-late diagnosed, or even the moderately-late diagnosed. If you can teeter along the poverty line, apparently you're considered okay.

Interestingly Dr. Lauren Motron recently stated that ABA therapy got no scientific basis, and with the exception of those with intellectual disability, autistics do learn to talk and basic living skills in a supportive environment, even if a little late.

I've not been through ABA, so someone please correct me if I'm wrong, but the people who've described going through it made it sound like the purpose of ABA is to 1) make resistant kids compliant/obedient and 2) make kids act more like NTs. I'm not sure if life skills like cooking, safety, or transition to adulthood are part of ABA. I think speech therapy was done by a different specialist (my speech therapist definitely did not try any ABA techniques on me).

This begs the question, what about the adult aspies with average intellegence? It seems they are rarely even getting to this clinicions office for an AS assessment. Because they are of average intellegence they are technecally "high functioning" but are likely in the group that are coping poorly with no relationships and not living independently. That means they probably are often plodding along no diagnosis due to lack of money or have accepted a misdiagnosis. If they do get to a clinicion specilizing in Adult Aspergers that can diagnose them with severe aspergers/ASD Level 2 the clinition will have little experience with their type of Aspergers. They will not be hired by those companies hiring "genius" Aspies to show how progressive they are. The services and supports available for the Autism Speaks stereotyped autistics will be very inadequate for them.

Nevertheless, it is a startlingly different picture from the "total-deficit incapable of independent life or achievement" stereotype that Autism Speaks so singularly promotes as the true representation of people on the spectrum. Information which counters that propaganda is in short supply.

True but this is doing no good for the "moderate" autistics getting the worst of both worlds. The genius stereotype is popular now due to promotion by the media and certain autistics and worrier parents. Autism Speaks had a lot to do with starting this stereotype. It is counterproductive to dismiss the harm done by the high intellegence stereotype because the Autistics are a 24/7 burden stereotype has been and might be still be more harmful. It plays into the hands of those "autism is a horrific" believers who want to divide and conquer the autism rights and neurodiversity movements.

My MIL was almost given a dementia diagnosis. If it wasn't for me fighting tooth and nail for the ASD testing, the doctor would have medicated her to the gills for her perceived aggression (meltdowns), neurosis (sensory issues), OCD (non flexibility with routines, and worsening social skills. She was 75 at the time.

ASD doesn't go away, but everyone acts like it does. If you have problems with schedules and routines at 75, no one thinks ASD executive function issues. They think dementia. When you have s**t directional skills, and have issues finding familiar places, no one thinks ASD at 75. They think dementia. Had my husband not been diagnosed, my MIL would have been tossed on a mood stabilizer and an antipsychotic. We wouldn't have known any better.

With an 80% supposed divorce rate, most Aspies will not have a spouse/SO to guide them through medical issues. Children are a crap shoot. If your relationship is trash when the children are adults, very few will step up to help an aging parent. People who have no support system during a medical crisis are screwed, at least in the US.

My dad was diagnosed with a brain tumor a month ago. There was one bed in the acute rehabilitation unit. 20 patients were gunning for that bed. His doctors pushed like hell because his children would play an active roll while he was there. My father can also charm the birds out of the trees, so he is an easy person to like. The other patients were dumped at nursing homes because they had no support which is required for this program, or were judged *not willing to put in the effort* (don't know how else to put it). for whatever reason.

For every one ASD person who has a comfortable life, and can advocate for themselves, there are a boatload more that can't. For an autism success story in the media, you need to look behind the scenes of why it happened. Those parents have upper middle class or higher incomes. They have pull in their community and with friends. The parents have a 4 year college degree or more. Live in a area with many support systems (East/West coast, major cities in the fly over zone). The family can pay for private schools. Everyone is all behind make the magic work.

This is different from lower middle class ASD family, who has no extra money. There may not be much extended family support. They have to send their ASD kid to the crummy public school, who fights against given any SPED help. If you can't pay for therapists, you are stuck on a wait list. The therapist may not be a good fit, but that is all you can get. When the kid gets out of high school, there is no friend you can call to get him/her a job that isn't fast food. Someone who will cut the young adult a boat load of slack to get some work experience. Or send him to a good university that has supports for ASD students and helps them be successful.

The hospital I used to work at has granny drive bys. It's when someone dumps an aging parent in the ER lobby or parking lot and takes off, leaving the hospital to figure out what the hell to do with the person. The person isn't at the level of an mentally incompetent, but obviously need help with activities of daily living. In 10 years, 3 of the granny drive bys were men who most likely had ASD. Not bad enough to trigger social services, but for whatever reason the sibs didn't want to deal with the person anymore.

I remember one man's sib said their parents had died, and the house had to be sold. This brother wouldn't leave, and he couldn't live with them. The man was 50 at the time. 1989, Aspergers wasn't diagnosed. This man sat in our psych unit for a month before social work found a group home for him. Back then there was no assistant/shared living places.

I get people with ASD, who can run their lives successfully get tired of hearing how autism is all doom and gloom. The doom and gloom isn't about you. It's to draw attention to people with ASD who may never be gainfully employed and/or never be able to live alone. Our society deals with 60 years that can't keep their s**t together by tossing them in a nursing home. I wonder how many with older people with ASD as their only issue gets manhandled by the system thinking they have an organic brain disorder like dementia.

That's a very interesting post with so many important aspects to ponder.

I've never seen anyone but you raise this point about confusing dementia onset with AS challenges, and now I can see how that could happen (and no doubt has happened).

There is no advocacy whatsoever here for people who might be in that situation (shudder). Nor anywhere else it seems.

Study of aging autistic brains in American southwest