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Invisible people

by  /  27 January 2011


Among the elderly, autism is a nearly invisible malady, usually ignored, sometimes misdiagnosed, and rarely treated.

A group of researchers in the Netherlands undertook a review of the scientific literature and found only three papers on late-in-life autism. Next, they looked at screening and diagnostic tools for autism and found that many are unsuited to older people because they focus on developmental milestones too far in the past for most to remember.

Their case studies show that elderly people with high-functioning autism or Asperger syndrome are usually diagnosed after a major life change disrupts their routines, fueling anxiety, depression and irritability. These comorbid conditions may also mask the primary autism, however, which is why better diagnostic tools for elderly adults are needed.

Today’s senior citizens were children when Leo Kanner’s groundbreaking paper on autism was published in 1943. The Austrian physician Hans Asperger published his analysis a year later, but it took decades for his work to come to the attention of the English-speaking world. Asperger syndrome was not included in the Diagnostic and Statistical Manual of Mental Disorders until 1994, 14 years after autism was added.

As a result, senior citizens with Asperger syndrome or high-functioning autism are unlikely to have received a diagnosis early in life. Instead, they probably lived much as did the three men described in a November paper, published in International Psychogeriatrics.

Aged 72, 78 and 83 today, all three of the men described in the paper married and had children, although family members describe them as remote, rigid, inflexible about meal times and other family routines, irritable and socially awkward. Each worked in a technical profession. None had friends, though one, Mr. H, enjoyed sitting quietly by himself in the company of others.

After Mr. H’s wife died, he began shaving and grooming himself repetitively, though he preferred not to get out of bed. Mr. B was admitted to a residential psychiatric facility because his wife could no longer deal with his rages and unpredictable behavior. Mr. V, married for 53 years, was brought in by his wife after their son was diagnosed with pervasive developmental disorder and she connected his diagnosis with her husband’s behavior.

Over the past few years, as autism rates have crept ever higher in the U.S. and in Western Europe, talk of an autism epidemic has become common. But there are places where autism is diagnosed rarely, if at all — not because people there are immune to the disorder, but because it goes undetected.

The past, it seems, is one of those countries.

  • Anonymous

    A visionary sees through time as if it were invisible, but can we now only see Autism from our emerging adaptive perspective as a defect. Is it (autism) our frozen preserved genetic heritage living like a resurrected relic of our evolution, re engineered by our mass medication and vaccinations raising from the dust those who are less than Darwin’s fittest. Of course there is always a price to pay for the economic management of infant survival through mass vaccination. Compounding now with gene pool drift and Adaptive arrogance of modern self denial. The few carry this burden and are tainted, excluded like the understanding of truth. Truth and reconciliation are a world away from the western world, until eugenics becomes the economic solution, a final solution, can you hear an echo?. Geneticists work on a fix apparently ignorant of their collusion, eugenic tweaking or some other such smoke screen. Statisticians fudge the numbers as always to keep the paymaster happy. We should share the burden willingly , happily, respectful of the truth of our every foolishness and failure. Remember ‘all of Science, with all its funding, has a rising unexplained problem’. Is this a fear of truth, as was for Darwin, a truth too far. It is a rare ‘Scientist’ who steps out with the truth. Do they risk following the lonely route of rejection by sheep, by delivering understanding to parents who ‘know it their hearts’.

  • Avo Shirley

    I am thankful to read the above article by Deborah Rudacille..(not so sure about “Mark’s” response…but then I’m a Believer in God and His Creation…after decades…I am beginning to find answers and explanations as to why my sister is the way she is…and at 63 years of age….she has suffered a lot due to lack of diagnosis and proper treatment. Autism is no different from any other challenge a person faces in life. There is a problem, it needs to be identified, it needs to be helped. Some are able to be helped…others aren’t… my sister may never get the help she needs, but I’m not giving up and we’ve made a slight progress…there’s a long way to go, but we’re still breathing!!! …and so whatever Mark was rambling about up there on that 1 feb 2011 comment..about Darwins fittest, eugenics and geneticists…well, I’ll stick to be thankful for what God has created and mankind has fallen from….and I am thankful for the vaccinations that help our children have a better life… going to print this article now, and add it to my growing stack of stuff on Autism…at least now I’m finding info on Senior Citizens with Autism…thank you Google Research engine 🙂

  • James D. Beare

    At the age of 70, I recently retired from 48 years as an educator (teacher, counselor, educational diagnostician, and special education director-administrator). I was married for 38 years (ended in divorce) and had two sons. After initially retiring in 1999, I returned to work on a diagnostic team with speech therapists and school psychologists diagnosing autism, but particularly Asperger’s. As I interviewed parents and teachers and took extensive histories, I realized that as a child and as an adult I exhibited virtually all of the characteristics of this ASD. In fact, my initial thinking was these children are not all that unusual because they were very similar to me in early behavior, interests, and cognitive functioning. As my colleagues were psychologists and even professors of psychology, I submitted my reflections and they suggested completion of the available screening instruments, which subsequently validated my own informal conclusions. I even recently completed the online “Aspie Quiz” and came up with an Aspie score of 165 of 200 and was dubbed “You are very likely an Aspie.”

    Now that issue is settled, my life makes more sense. I always had a paucity of close friends but many associations through my profession, church, and political activities. My neurotypical wife made up for many of my social inadequacies and attracted a wider circle of family friends.

    Being a person educated in psychology and counseling, I had learned social skills which I could exercise, albeit awkwardly. I was even recognized for having early “leadership” skills and elected president of my college student government and was an editor of the college newspaper. To obtain social recognition I took a yearbook and memorized first names and spoke to people by name. I practiced conversational skill and when possible bit my tongue to avoid speaking too much and lecturing others. I always had a strong interest in girls and worked to that end dating widely, though I was always perplexed by the prodigous social conversation of the opposite sex.

    At this point in my life I realize I had quite a bit of social and professional success. I attribute a lot of that to my intellectual abilities and rational approach to my social interactions. Also, my family really urged and worked on my social isolation by forcing me to play sports, join scouts, invite friends over, etc. Truly, social interactions, parties, personal conversation always left me mortified and feeling I was on the verge of disaster. I had to master my fear of public speaking by pretending the audience was not even there. I only later learned I was more successful by occasionally discerning my audience’s reactions.

    At 70, I am still the same personality as I was a young person with ASD or Asperger’s. I am content to stay on the computer too long, read, and even run or walk alone. I have to force myself to go to church, but do not stay for the coffee and social after church except rarely as an “exercise” of social skills. Upon the finalization of my divorce after 38 years, my exwife’s parting words were “You’ll have to pay someone to listen to you as I have for all of these years.”

  • Avo Shirley

    Dear James…I am so sorry for the way your story ended above…but am thankful that you were able to pursue education and employment, married life and children of your own… I wrote in the spot above yours dated 12 April 2014 of my sister’s story with “undiagnosed Autism until age 63″…we have come a long way since that short story was written…I have learned of how she “processes” all incoming information…I have learned of “sensory overload” and how terribly she has been affected by that all these years…I sometimes wonder if we aren’t all located somewhere on the Autism Spectrum…one person may be 180 degrees away from the next…but, they all have their ‘quirkiness’…I hope that your children remain close to you and have learned, as I have, that living in the same household as ‘one with special needs’ requires a lot of love and a lot of forgiveness…as I pray for my sister and all of you that I meet on these little websites…I am thankful for my own husbands understanding of my sorrow all these years…I am thankful for our childrens understanding and acceptance of my sister’s condition…and I pray for our brothers who are trying to figure out what this is all about…and I pray for my sister…and her one day at a time existence and pursuit of peace in her daily struggles…we don’t give up…and she has been such an inspiration to me…she does not give up…she gets up each day and takes it on…challenges and all…May His Peace be with you.

  • Carolyn Webb

    I am sure I am on the spectrum but I was not recognized as having Pervadive Development Disorder-NOS or mild autism. But I remember back in the 1950’s having trouble with social development and being vehind in
    math skills even though I could read at grade level. I was regarded as being socially awkward and ungainly much to the horrible SHAME and embarrassment it caused my socially upper middle class family. To make things even worse for me I was 40 pounds overweight and without good facial features and that did NOT help matters any! I also had the gastri-intestinal problem of motion sickness which is common among mildly autistic children! I had a terrible time in childhood and teenage years but managed to graduate from a regular high school and with a lot of struggling managed to get two long term steady jobs in the regular job market as office worker typist-transcriptions at first for a large company and after 22 years when during the 1992 recession I got laid off from the first job I learned to do computer word processing and got another office computer operator dictaohone transcription job which lasted 19 years until the recession of 2011 when the company I worked for was merged with another company and I got laid off again at age 62. I had to grab Social security at 63 because I was not lucky enough to get another job and I never claimed dis aboyt because of autism. When I was a kid psychiatrists did me no good because back in the 1950’s they thought I was nothing but a horribly fat, ugly and stupid borderline retard who was deliberately misbehaving just to shame and irritate my parents to get more than my fair share of their attention! The psychiatrist only caused both my upper middle class parents to be very hostile towards me and that is why my relationship with them was SPOILED permanently! I married but gave no children. I knew that I had some sort of dis aboyt that held me back even though for many years I did not know what it was. But I was afraid of having a retarded or autistic or schizophrenic child because I feared that my disability
    was Genetically transmitted! It probably is because I discovered my middle class parents had relatives they were ashamed to talk about and my PERFECT “PRINCESS” snooty sister has a son who is both retarded and autistic! Ilike I said I was never formally diagnosed as having PDD or mild autism because back in the 1950’s the only kids who got diagnosed as PDD or Autistic were the very severely affected kids who banged their heads against the walk or rocked back and forth and who had little or no communication skills! But From what I now know about Autism and PDD being a spectrum kind of disorder and bearing in mind all the symptoms I had I am convinced I am one of many baby boomer undiagnosed adults living on the spectrum.

    • Linda Young Hastings

      I have come to realize from reading about other people’s lives, that I too must have this pervasive development disorder. But I never knew why I had such anxiety and problems . I am 66 years old now , Lord only knows how I made it this far…
      When I was a child I wouldn’t look at anybody in the eyes , and would be so frightened to talk on the telephone. My anxiety was so back I had panic attacks , when I was driving in a car and want to jump out while it was moving . I would try to work but I had such anxiety I would be in the bathroom with diarrhea. And I drank of course before I went to my job , not always but certain jobs . I worked ,but I was always leaving a job and finding another one. So I never made any money . My teen years were horrendous, and I have been married 2 times with many live in situations that were horrible . Drugs , fighting police involvement jail even.
      I was married for 21 years to an attorney who disrespected me and was mentally abusive and controlling . I have 2 children who are adults now and say I was a terrible mother . My son has problems and is physically and emotionally not doing well. My daughter wants to keep me at a distance . I have moved every 5 years since I was young the anxiety made me so restless. I keep repeating the same mistakes it seems like . My drinking has gotten worse but at least I don’t take drugs. Thank you for this website and other people’s tales of woe. But what do you do now? Linda


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