Where are all the old people with autism? Most of them are dead. Can we stop denying their existence and start trying to make a difference?

18 Mar

One of the most aggravating arguments one sees in the never ending online discussions of whether autism is a “vaccine epidemic” (it isn’t) is the “where are all the old people with autism?” This invariably comes from faux autism advocates (think Age of Autism and their sponsors) who have done nothing to support an actual answer to the question. Have they backed an effort to study autistic adults, their needs, what has worked, what has failed? No.

Well, thankfully the autism community and the autism research community do consider the question of autism and adults to be important. No where near enough research goes into this field, but some does.

A study recently came out that explores, well, the title says it all: Premature mortality in autism spectrum disorder

Doctor’s diary: Why do people with autism die so young?

Now, a major Swedish study provides a wider perspective on premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and colleagues at the Karolinska Institute compared mortality rates of people with autism with the general population over two decades. Speaking from Stockholm, Dr Hirvikoski says that she was “shocked and horrified” at the results. Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.

Read that again–the life expectancy for autistics like my son is 40 years.

One might claim that I am using this paper to criticize those who promote the “autism is a vaccine epidemic idea”. First off, they deserve criticism. They have wasted 2 decades of advocacy efforts chasing a failed idea. Perhaps some small fraction will read Dr. Fitzpatrick’s article and heed the wake up call–we need to put our efforts into advocating for a better life for adult autistics. By “we” I mean autism parents. Thank god we have autistic adults who are fighting this fight now. Rather than dismiss them with the standard, “you are not like my kid” arguments we autism parents throw around, it’s time to ally with people who are working to make a difference.

I can already write the responses to this study that will come from faux autism advocates and the vaccine antagonistic: “Look at the high mortality rate for autistic adults. That’s the damage that vaccines cause!”

If you are even thinking that, you are part of the problem, not the solution.

And if you are thinking, “this is only a problem for autistics with intellectual disability”, here’s a line from Dr. Fitzpatrick’s article to consider:

For people with autism who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.

As John Elder Robison (autistic adult) has discussed, suicide is a risk for those without intellectual disability.

What sort of supports–housing, employment, day programs, medical–do adult autistics need? What contributes to early death vs. living a long life? These questions are real. These questions deserve our advocacy. And the entire story of “autism is a vaccine epidemic” is built around denying that there is a large group of undiagnosed adult autistics. It is built around diverting advocacy away from pushing for a better life for people with disabilities and into opposing vaccines.

We just spent a couple years here in California trying to restore funding to the disability services system. You would never know that if you were reading the sites focused on vaccines, like the Age of Autism blog, or Robert “Dr. Bob” Sears’ Facebook page. You would see a big effort wasted on lobbying against a California vaccine bill (complete with Dr. Bob claiming he represents my kid along with all autistic students in California–where the hell were you Bob when we actually needed you?).

The message is simple and clear–autistic adults die much sooner than the general population. If nothing changes, my kid will likely never reach my age. There is a very loud advocacy effort focused on vaccines. OK, even if you don’t agree with me that you are wasting your time, you need to be putting real effort into areas that will make change in how we support autistic adults.

For those–think Anne Dachel of the Age of Autism for one–who keep on saying “where are the older adults with autism”. Keep saying that. And watch nothing change. And blame someone else for it. For those who actually want a better life, no time like the present to start affecting change.

By Matt Carey

116 Responses to “Where are all the old people with autism? Most of them are dead. Can we stop denying their existence and start trying to make a difference?”

  1. stuckintexas March 18, 2016 at 00:20 #

    Do they really die young, or are they just under-diagnosed?

    It makes sense that someone with medical problems will see Drs more, be more likely to be diagnosed. So which came first?

    In my family we have 4 known male autistics. They are 77, 54, 52, and 21.

    Aside from Mr 54 (who leads a tough life), I don’t foresee any dying early. Mr 77 sure hasn’t!

    • Sullivan (Matt Carey) March 18, 2016 at 01:18 #

      This study looked at causes of death in autistics. So it isn’t just saying that the low numbers of diagnosed adults in the older ages is due to premature deaths.

      Until not long ago, the California DDS system had an autistic client who was born in 1917. He lived to at least ninety.

      People like Dan Olmsted and Mark Blaxill, David Kirby, and others, new (of if they didn’t they are even more sloppy and careless than I think) about this person. And others who were born before thimerosal was used in vaccines. But they told their story that “autism is new” and declined to inform people of the facts that so inconveniently disproved their hypothesis.

      • autismanswersnow July 18, 2017 at 18:25 #

        Just read your article. I spent one year in Orange County working at the development of a school for individuals with autism implementing sensory enrichment as a teaching tool. While there, I investigated to find late teens and adults with autism because I wanted to make sense of the assertions of some organizations about “cure” for their kids. If they are all cured by the various modalities funded by the Government, then, it would be logical that we can’t find them, passed a certain age.
        It took time and commitment to finally find hundreds of them, housed in group homes in small towns away from the public eye.When I visited those places and asked about the percentage of autistic adults, the answer was: we do not house autistic individuals, we serve individuals with mental disorders and developmental delays.
        Meeting some of them, it was clear that there was only a change in terminology and this can be a good way to end up with minimal percentage of adults with autism.
        I have started a project in East Canada with a special attention to adults with autism. While they are more visible, in this area, they have “double diagnosis” such as bipolar, OCD, Depression.

        I am not familiar with the US support to adults with autism but I find that in Canada there is nothing but pharmaceutical compounds to help them, and their workers, go through the day.
        Why so minimal motivation to work and find better solution for those non verbal individuals? Parents have given up or are no longer around, there is no passion in the key holders to maintain hope for a better future?

    • Lori Hilt November 17, 2021 at 21:30 #

      I just found this article. I just found out at age 51 I have autism I have been trying to get answers my whole life. I have suffered hard living on disability with no help in sight. Not one counselor has diagnosed me right. I have begged for answers. Almost drank myself to death. I don’t feel like I am going to live much longer. I need help. This article said everything I have been so upset with for years. I am babysitting a child with my same issues and the answer every time and it’s autism.

  2. wzrd1 March 18, 2016 at 00:54 #

    Their question is beyond disingenuous.
    When they ask that, I’ll ask them where all the younger people with dilated cardiomyopathy. The few who recognize the term would then mention elders and I would remind them that I said younger.
    When something would be muttered about birth defects, I’d ask who else?
    When they finally deny any others, I’d raise my hand.
    Insidious onset of hyperthyroidism causes gradually increasing blood pressure, which was only mildly controlled. I also have aortic dilation, which would be another confounder for the idiot brigade.

    Where are all of those older people with autism? I have quite a few at work, as I work in a Fortune 200 IT company. We have most of the spectrum of humanity, courtesy of extreme ADA compliance and the company being an IT company.
    My team’s senior lead is a quadriplegic, a programmer I see from time to time has a 36 inch screen for his vision loss. The entire behavioral spectrum is present.
    Want to see the entire spectrum within Asperger’s? If you can get in, go to the NSA.
    One upside to working with organizations that both appreciate and take care of their people is a lower suicide rate, good health insurance and time off given for medical appointments.

    But, the antivaxers are a fact free group. No amount of factual information will penetrate their density – a density greater than the black hole at the center of our galaxy.

  3. John Elder Robison March 18, 2016 at 00:56 #

    I see those statistics and consider I am in that age range . . . No surprise I find it troubling. My autistic dad died at 69. My likely autistic and certainly ADHD 1st cousin at 40. My semi-verbal 2nd cousin died at 40.

    • Sullivan (Matt Carey) March 18, 2016 at 01:12 #

      Hi John,

      I remember very well sitting across from you in one IACC meeting where you made the point that suicide is pretty much by definition a problem of autistics who, like yourself, have more independence (I am paraphrasing a lot here). It was a powerful statement.

      Thank you for fighting for autistics across the spectrums. My kid needs people like you.

    • Aspie-Autistic1957 March 19, 2016 at 17:31 #

      I am 58 and after cruising along health wise in the last year I have suffered a mild stroke and recurring tongue cancer that has made me a non verbal autistic. I had none of the risk factors for tongue cancer. I will never know for sure but it does make me wonder what role if any living as an undiagnosed autistic for 55 years played in my predictament

      • Sullivan (Matt Carey) March 21, 2016 at 19:09 #

        I wish I could send more than good wishes to you. But good wishes I do send. I wish you well in your future.

    • Vicki Marsh March 30, 2016 at 07:16 #

      Have read your books. I am still alive at 69. Painting gave me reason to be.

  4. reissd March 18, 2016 at 01:57 #

    Very distressing. Do they address why?

  5. coachbrandonwilliams March 18, 2016 at 02:19 #

    Check the HIV community 70% of us are living with undiagnosed Neurocognative issues.

  6. chavisory March 18, 2016 at 03:34 #

    I wouldn’t discount the threat of suicide in autistic people with less independence or with intellectual disability. I’ve seen people wonder how many “wandering,” drowning, or walking-into-traffic “accidents” are not accidents.

    Last I read, something like 50% of non-speaking people still don’t have access to any kind of AAC device or other mode of communication.

    What does it do to people, to go 50 or more years without ever being given a chance at making yourself understood?

    • Kee March 30, 2016 at 11:02 #

      I would also point out the number of autistic people who are killed by family members and carers.

    • Kelly June 2, 2016 at 16:42 #

      You are pretty much on point with this comment. I am 55 years old and have held at least 22 jobs in the past 20 years. I have no family support for ASD as well and many have ended relationships with me due to my autistic qualities. Going 50 or more years without given a chance really has made me want to leave this world much earlier. I have an elderly mother and she is the only one who really talks to me in the family. I am going to need some resources but I seriously doubt that I will be able to get them. Do you want to know what is like to be 55 years old and on the spectrum. It is no picnic and only gets worse with each passing day. I had an actual medical problem that was delayed in getting the proper diagnosis and treatment because the medical staff I first dealt with said I was on drugs/alcohol which I was not and during the course of a year had received at least 10 blood transfusions and finally it was believed that I had a medical issue once I almost died from severe GI problems that prior to that was “in my head” or I was “drug seeking”. I do NOT have a history of alcohol or drug abuse. I also worked in emergency services for a number of years. My last 2 jobs were lost to due autistic related issues and being misunderstood. I would say that most of the job losses incurred over the past 20 years have been autism related. One employer took me off the schedule when he found out I was autistic because he felt that I would pose a danger although I had been doing a good job and had no clinical or disciplinary issues at that job. The last job I lost was one where I had decided to go back and use my Computer Science degree and get back into the computer field. I was forced to resign from that $14 per hour technical support job after most of my colleagues did receive the one year raise and most were promoted to the tier 2 level of support. I had a stellar annual evaluation and recommendation from my supervisor but the director of front line support would not promote me and said that “what if I had anxiety when presented with an adverse situation” so I was not eligible for promotion to tier 2 support. I HAVE updated my computer skills to be able to compete for a good paying job and so far the only thing I can get at this point is working in a grocery store, Walmart, or manual labor. I ended up piecing a bunch of part time jobs together to be able to make ends meet. I have decided to apply for disability at this point and continue to work on my computer certifications like A+, networking, security and the Linux Systems Administrator and Engineer course. I had been a Unix Systems Administrator and a Software Engineer about 21 years ago in the NASA space shuttle program. If I was not the strong person that I am I would have already looked at suicide as an option. I will not be able to get the medical care that I need for autoimmune and digestive issues. The next time I am bleeding from my stomach/small intestine, I will not be seeking additional medical care even if it is life threatening. You want to know where all the “old people” on the austistic spectrum has gone? I know several in a similar predicament and it is because they have had enough and committed suicide or just said “to hell with it, I m tired of fighting” and totally give up because there was no support or resources for them unless they were fortunate enough or “autistic enough” to be taken seriously as one on the spectrum. Yes, I do have a formal diagnosis.

  7. mooncatadams March 18, 2016 at 04:27 #

    Well, here’s one who, at 4 months short of 70, can say he’s never really known love, from anyone. Not suicidal though, I got used to it early on. Remarkably well-adapted too.

  8. Bev Leroux March 18, 2016 at 06:09 #

    Well I was diagnosed with Asperger’s at 65 in 2010, just before I retired. I had 20 jobs in 45 years, 3 marriages, 3 long-term relationships, and one child who is now 44 and à low botto alcoholic. Never diagnosed but very likely on the autism spectrum. Gifted and troubled since childhood. So I am 70, now, and still going strong… active as a self advocate and enjoying the freedom retirement gives me to do what I love… and onky what I love… every day.

    • myblissdesigning March 18, 2016 at 06:17 #

      Well I was diagnosed with Asperger’s at 65 in 2010, just before I retired. I had 20 jobs in 45 years, 3 marriages, 3 long-term relationships, and one child who is now 44 and à low bottom alcoholic. Never diagnosed but very likely on the autism spectrum. Gifted and troubled since childhood. So I am 70, now, and still going strong… active as a self advocate and enjoying the freedom retirement gives me to do what I love… and only what I love… every day.

      And that’s just a smidgen of my story. Recovered alcoholic, 34 years sober. Going to visit my new great grandson in Upstate New York next month.

      • Joy December 31, 2018 at 21:55 #

        What makes the difference for you? How do yo go on?

    • Cat March 19, 2016 at 21:47 #

      Bev are you on Facebook? We have a relatively small secret group for women 40+ with aspergers/autism that you may enjoy

      • Miilanna March 31, 2016 at 07:25 #

        I’m almost 56. Am I too old for your group?

      • Betina March 19, 2018 at 17:55 #

        May I please join your group? I am a 58 yr old aspie and would love some contact with people who can relate to me and/or my history of severe abuse, attempted suicide (all before age 18) and relationship chalenges.

  9. MichelleSk March 18, 2016 at 10:58 #

    Evidence that high levels of stress is a killer, and that accommodations and supports are necessary if we are to live longer, healthier, productive lives.

    • wzrd1 March 18, 2016 at 16:39 #

      Well, if stress is a killer, I should have major medical issues.
      Fortunately, I only have hypertension with high wedge pressure, tachycardia and autoimmune hyperthyroidism.
      Oh wait, yeah, those are stress related major medical issues. Yeah, stress can be a killer.
      Maybe I should hit the next person that gives me stress over the head with a Buick. Yeah, that’s also part of hyperthyroidism.
      As weakness is also part of it, the chances of me hefting a Buick are even less than the utterly unlikely chance before I became hyperthyroid.

      Now, he’s a more on topic question.
      How many die in institutional neglect? Long term care, where individualized care is nearly absent, where someone being irritated refuses food and medicine? How many staff ignore that and the patient eventually decompensates and dies?
      Based upon my own observations of long term care facilities, far, far, far too many.
      At least, in the home, the long term disabled or ill get individualized care.

      • giftbearer April 2, 2016 at 19:25 #

        Excellent points! I think more needs to be done to provide help in people’s own homes, and that care should be consumer-driven so as to maintain one’s dignity.

        The long-term care facilities are hotbeds of abuse and neglect, and too often used as dumping grounds when one’s medical needs become “too much” for society.

    • mplo February 24, 2017 at 17:32 #

      Evidence that high levels of stress, especially ones that are constant, are killers and no good for anybody, whether they’re on the autism spectrum or not. supports and interests are necessary for living long, healthy lives, for everybody.

  10. Roger Kulp March 18, 2016 at 15:11 #

    This is especially true of those who are more severely disabled.Before the 1980s,people who were more severely disabled with developmental disabilities,not just autism,were put away in institutions,where they very quickly died either from neglect,or from any of the many medical issues associated with autism.

    I am 55 years old.I was diagnosed with autism,and multiple learning disabilities as a child in elementary school.Up until 2009,when my cerebral folate deficiency was discovered,I was verbal,but otherwise low functioning.I have never held a job.I never went to college.I lived with my mother up until her death in almost four years ago.In fact,I had to throw something around her naked body to physically drag her to the ambulance.as she was dying of a sudden,acute stroke.Before 2009,my mother was with me pretty much around the clock.I could fully dress myself and use the toilet by the time I was nine years old,but my mother did almost everything else for me or with me.My mother was one of the few parents who went against the wishes,of teachers,doctors,and the like,and refused to put me in an institution as a child.We were living near Randallstown,Maryland at the time,and my mother and I once had to go to a hearing,in 1971,to prevent me from ending up at the infamous Rosewood Center in Owings Mills.

    There are probably other middle aged seriously autistic adults,that are still living with aged parents.How many we will never know.

    After my mother died,and I had been treating my CFD for three years,at the time,the hospital had committed a major HIPPAA violation,by digging into my medical records.Had it not been for my landlady,I would have ended up in a group home against my wishes,but she would not allow anyone to come in the house.I was able to successfully demonstrate to the case worker from adult protective services,that I had improved enough to where I could live on my own.Had I not been treating my autism this way,I would have not been able to function independently,and may well have been dead from any number of neurological issues.Finding underlying causes and treatments for autism is very important,especially so more low functioning individuals can live independent lives.

    I have been pretty much free of autism,and other brain related problems,as long as I stay on my medications,and avoid dairy,but I still have many medical issues.Looking for an answer to all of these medical problems has been a real adventure in and of itself.I have had far many more medical issues and regressions than even someone like Ms. Daschel could ever dream of.I have nearly died many times from either acute infection or unexplained organ failure.My mother and I spent decades fighting doctors,to try to convince doctors,there was something seriously going on with me medically,but I do not blame them.Doctors could not diagnose what they did not know existed.It was not until 2009,that I began to get some answers,starting with my cerebral folate deficiency.I would spend the next six years racking up one medical diagnosis after another,and finally,in October of 2015,getting a whole exome sequencing test,that showed I had a unique form of an extremely rare neuroimmune disease called Ataxia-telangiectasia-like disorder.MRE11 mutations.A disease first documented in 1999.There are only 25 other known cases in the world.None documented with autism,and none where the patient has not lost the ability to walk.I am unique.After my diagnosis,I have had no luck getting a doctor in the US to see me,and I may have to go to the UK or Netherlands for further treatment.

    It is very difficult for an adult with autism to get medical treatment,and a medical diagnosis beyond autism,but it can be done.It takes time.It took six years,and lots of had work for me.A medical/genetic diagnosis has to be something you really want,and have to be willing to work full time to get.

    • Giftbearer April 21, 2016 at 19:39 #

      You are so right! It is a full-time job and huge obstacle to overcome getting good medical care and getting medical professionals to first even take you seriously. I am in a race against the clock right now as we speak, not able to eat, losing lots of weight and feeling systemically ill.I think I’ve hot on the underlying condition but now have to get proof in black and white and there don’t seem to be the right specialists in my state. I hope I can find the care I need in time but my health is failing fast. Around here doctors don’t want to see it because then they’ll be obligated to treat it and that costs money and my insurance is Medicare/Medicaid. You can pretty much figure out the profit motive these guys have in not treating an orphan disease or constellation of ones on the same allele.

  11. Brian Bruce March 18, 2016 at 18:03 #

    This is certainly an important, if depressing, study and call to action for all true advocates. My son is only six, but really the fight starts now to ensure that he has the resources and accommodations that he will need as an adult.

    Regarding faux advocates, I would argue that they are not really asking, “where are all the autistic adults?”, but rather “why don’t I see autistic adults?”, for which there are several, mostly negative reasons.

    First, for a positive reason, many of the deficits common in autistic individuals are ameliorated or even eliminated by adulthood. The non-verbal three-year-old might have typical or near-typical language capability by adulthood. They eight-year-old who struggles with OCD tendencies will have developed strategies to dealing with her impulses. Hypersensitivities can diminish, and social skills can grow. The flip side to this, unfortunately, is that many autistic individuals learn to suppress certain “undesirable” traits in public, often at a high mental cost.

    Second, as pointed out, sadly many autistic individuals do not make it to adulthood or old age. This is a tremendous failure of our mental health system that is not unique to autism. There are other possibilities beyond suicide of this higher mortality–accidents, co-morbid medical conditions, etc.

    Third, the reality is that those who are too “different” are forced to the fringes of society. Out of sight, out of mind as they say. They are in institutions, shut in their homes, or on the streets.

    But ultimately, as you point out, the reason these faux advocates don’t see autistic adults is because they aren’t looking.

    • Roger Kulp March 19, 2016 at 14:16 #

      I have a very long post about the story of my life I posted here yesterday.I would like to see it posted.It needs to be seen.But I assume what Brian Bruce is talking about here is autism without regression.This does not improve in the long term.My sister and I have two very different types of autism.Mine was lower functioning,but verbal,before treatment,with many medical issues.My sister is higher functioning,with bipolar disorder,and other mental health problems.We both have had multiple autistic regressions,starting as infants or toddlers,and continuing well into our forties.

      • chavisory March 20, 2016 at 15:11 #

        Even people who look “higher functioning” in adulthood can experience regressions. But when everyone is accustomed to seeing someone a certain way, they may not be recognized for what they are. Someone who’s never been diagnosed or recognized themselves as autistic likely won’t realize what’s really happening.

      • Brian Bruce March 22, 2016 at 19:47 #

        I agree with you about regression. I guess my larger point was that the average person would probably have difficulty recognizing an autistic adult, and I would guess that AofA types do as well. Because they would have to actually engage with the adult autistic community to learn something.

    • Miilanna March 31, 2016 at 07:38 #

      As the autistic learns to behave more like a neurotypical, the expectations are raised. As s/he ages, society becomes less and less accepting, claiming we (autistics) are old enough to know better. No matter how well we compensate and seek to behave and communicate as expected for our age it eventually becomes impossible, and we burn out completely.

      The 80% unemployment estimate for adult autistics may be necessarily an estimate, but it seems to me a very likely accurate one. Employers easily fire autistics, no matter what the law says. We don’t fit in to the corporate culture, and we are often too easily manipulated and set up. Bullying is not only seen in childhood … autistic adults encounter it almost daily.

      Thank you for caring

      • giftbearer April 2, 2016 at 18:54 #

        You hit the nail on the head! Adults burn out after years and years of not getting the services and accommodations they need, sometimes not getting the official diagnosis until late (or not at all), and when they go and try to tell doctors they need care they are blown off, disbelieved, or are misdiagnosed/misunderstood as something else. Meanwhile their medical problems get progressively worse, and because nobody wants to work with them and invest the time and effort, ultimately they die. There is alot of bullying and exploitation of adults that happens in the healthcare system itself! The general public has no idea the magnitude of it or how prevalent such incidents really are and don’t realize that they’re routinely brushed under the rug especially in large University health systems.

    • giftbearer April 2, 2016 at 20:02 #

      That last sentence in your post describes it in a nutshell, exactly!

      People like that have an opposing agenda and clearly don’t want to see what’s really going on or do anything to level the playing field. They’re simply mouthpieces.

      Oftentimes the faux advocates do faux investigations just to give the appearance that the provider in question has a system of checks and balances. (Generally facilities that get state and/or federal money are required by law to have an internal grievance procedure, but all too often it’s phony).

      Because they are disingenuous the agents employed by these places write slanted reports designed to side with the perpetrator(s) and actually participate in the bullying in an attempt to protect the offender while discrediting the patient.

      I really would like to see some expanded Hate Crime legislation enacted that makes this type of deception an added Federal offense.

      Professionals who are supposed to be there to help should be held to a very strict standard of professionalism, especially given the fact that people who are autistic are at risk for being taken advantage of when they wrongly perceive that someone has good intentions when in fact they do not. This is a huge problem.

  12. Scott Bunkelmann March 19, 2016 at 17:48 #

    The Karolinska Institute’s study and what it suggests as per the mortality rates of people with autism is, at the least, troubling, but should more correctly be seen as alarming.

    It also emphasizes the urgent need for services and supports for people in the spectrum and their families.

    It is time to go beyond not only autism awareness, but also autism acceptance.

  13. Cat March 20, 2016 at 16:29 #

    I don’t like your title at all – “most of them are dead”? How awful, alarmist and insensitive. If you care about those of us who are living (and there are many), please change it.

    • wzrd1 March 20, 2016 at 16:39 #

      What suggestion do you have that remains factual?

      Where are all of the old people with Autism, they’re chasing unicorn farts?
      The title is accurate and germane to a major problem.
      Not caring about the living would be to sugarcoat the problem or worse, deny that there is a problem.

      • Cat March 20, 2016 at 17:00 #

        I run a group for women 40+ with autism/aspergers – there are plenty of us. I would prefer “many” to “most”

      • wzrd1 March 20, 2016 at 17:18 #

        What is being made clear is that we’re failing as a society to properly care for autistic men and women.
        We really need to do better and to do that, we need to acknowledge that there is a major problem.

      • Cat March 20, 2016 at 18:50 #

        I don’t disagree with that. I am 58 and live it. What I oppose is the word “most”. You have no idea because we don’t know the actual numbers involved. Change it to “many” and I am satisfied.

      • wzrd1 March 20, 2016 at 18:54 #

        Operable here:
        “Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.”

    • mplo August 19, 2017 at 14:30 #

      Good point, Cat. Thanks. It would be nice if more people had your attitudes, but they don’t.

  14. Maurine Meleck March 20, 2016 at 22:38 #

    One would need statistics on the number of adult autistics that have committed suicide to even begin to believe this. The study itself is highly suspect and panders to those who continue to say that we have always had 1 in 29 boys with autism. But then studies do that mainly to give vaccine injury deniers “a get out of jail free” pass.

    • brian March 21, 2016 at 00:34 #

      Maurine Meleck wrote, “studies [refer to a static prevalence of ASD] mainly to give vaccine injury deniers “a get out of jail free” pass.”

      While it might be satisfying for someone who has no training in science or medicine but who is the grandmother of two boys with ASD to again suggest that there is a world wide conspiracy of scientists and physicians to suppress what she has read on anti-vaccine web sites and believes to be true, there may be another reason that experts in the epidemiology of autism reject the idea held by Meleck and her fellow travelers that there has been a vaccine-related ‘epidemic’ of ASD: the data doesn’t support that hypothesis.

      • wzrd1 March 21, 2016 at 00:39 #

        Well, there is a global conspiracy, a conspiracy to cause the mass extinction – of measles, polio, mumps, rubella, polio etc.
        I really like that open conspiracy. May that actually come to pass and the vaccine preventable diseases become nothing but another footnote in history, as smallpox has done.

      • reissd March 21, 2016 at 00:41 #

        Doesn’t conspiracy imply secrecy?

      • wzrd1 March 21, 2016 at 00:59 #

        Yeah, but as history has shown, we’re really lousy at keeping secrets. Someone blabs. 😉
        Especially when the leadership blabs in front line news stories about vaccination campaigns. 🙂

      • MI Dawn March 21, 2016 at 16:22 #

        Totall OT but I can’t leave this in many places…

        Wzrd1: I saw you were looking for a new Macbook but didn’t like the smaller screens (or price!) Sullivan has an email address for me. If you are interested in a 17 inch Macbook (2008 but wiped clean) let me know. It works just fine, although slow with Yosemite. I had to switch to PC for work-related reasons.

      • wzrd1 March 21, 2016 at 16:50 #

        MI Dawn, how much?

      • MI Dawn March 21, 2016 at 17:59 #

        Let’s discuss, but probably just shipping.

      • MI Dawn March 21, 2016 at 18:01 #

        Oops…meant to put also: email is my name (without the state), with cnm, at aol

    • Sullivan (Matt Carey) March 21, 2016 at 18:37 #

      Wow. Just wow.

      You are so much a part of the problem and YOU JUST SHOWED THAT YOU DON’T CARE.

      What is the one message that you got out of the above? That your precious “vaccine epidemic” idea has another flaw.

      Just skip over the fact that my kid has a life expectancy of 40 years–AND YOU ARE DOING NOTHING ABOUT IT EXCEPT TAKE ADVOCACY EFFORTS AWAY FROM AFFECTING CHANGE.

      Seriously– you (collectively) are causing so much harm. And, yes, you get a “get out of jail free” pass for all your harm, so forgive me for not appreciating the irony.

    • Sullivan (Matt Carey) March 21, 2016 at 18:38 #

      “One would need statistics on the number of adult autistics that have committed suicide to even begin to believe this.”

      What an ignorant statement. Seriously ignorant.

      What is the paper referred to above except as study that included the number of adult autistics who have committed suicide.

      WHO, Maurine, not THAT. Who. We are talking about people not things. Show some respect at least for the community you are damaging.

    • mplo August 19, 2017 at 14:37 #

      The so-called “link” between vaccines and ASD was disproved and tossed out by the wayside years ago, and the British-born Dr. Andrew Wakefield who concocted that “link” lost his license to practice medicine and his accreditation, because it was found that he had deliberately and knowingly used flawed, falsified data to create his study on this matter. Dr. Andrew Wakefield deserved to lose his license, because he took lots of gullible, stupid and/or vicious people under his wing and set a very dangerous precedent.

      What’s equally horrific–and unfortunate is the fact that many stupid, vicious and/or gullible people still believe in that and have refused to vaccinate their children, which has resulted in a come-back of diseases such as measles, diphtheria, polio and other deadly but preventable illnesses, and they’re much more potent strains than they used to be.

      • Wendy Anne August 15, 2019 at 08:11 #

        So ignorant. Believing what the professionals say without having real proof. Soooo gullible. My son is severely Autistic because of vaccines and I don’t care what the experts say. The CDC would have such a lawsuit on their hands if they admitted to vaccines causing Autism. My son also has Epilepsy which is related to Autism. He had a DPT booster at six months old and changed within hours of the vaccine. That is not a coincidence. We held off on his MMR vaccine. I waited until he was six and just did the Rubella part and he was screwed up for months. VACCINES CAUSE AUTISM.

      • Sullivan (Matt Carey) September 22, 2019 at 19:27 #

        you are so typical of the anti vaccine movement.

        Did you read the study? Clearly you didn’t. Clearly you don’t understand actual research. You scour the internet looking for people who support your opinions and ignore actual research.

        It’s too bad parents like you become tools and willing members of the anti-vaccine movement. Your kids deserve better.

      • Sullivan (Matt Carey) September 23, 2019 at 00:14 #

        ” I don’t care what the experts say. ”

        That’s why you believe. Believe. You don’t know. You believe. Against evidence.

        Sad thing is, you and your kid would be better if you accepted facts.

  15. Seth Bittker March 21, 2016 at 15:57 #

    Hi Matt,

    I wanted to highlight that there are some people like myself that broadly agree with you on vaccines, but still think it is highly probable that there has been significant increases in the real prevalence of autism (not just the nominal prevalence) during the last couple of decades in most developed countries.

    The trouble with autism is it is traditionally defined behaviorally which can be subjective. So it is easy to get into arguments about what is or is not autism or missed cases and as you know the behavioral definition has changed over time. However, there is good evidence in the medical literature that some other autoimmune diseases with stable more objective definitions have increased in recent decades. For example, based on serology, the prevalence of celiac has increased by at least a factor of 4 in a Minnesota population between the 1950s and the 2000s. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704247/. Similarly, investigations of type 1 diabetes in children have found that it has increased significantly in recent decades. For example, see this study based on data from Finland: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(08)60765-5/abstract

    As autism often has a significant autoimmune component based on serological studies, it seems highly likely to me that the real prevalence of autism has been increasing as well.

    • Strawman March 21, 2016 at 18:23 #

      I agree. There may be an increase but there are so many things that factor in. A relative brought her baby boy to my house about 16 years ago. At the time we didn’t know that both our baby boys had autism. They are not blood relatives. What? Not one person in either of our families had a history of AS. Neither of us even ever met or saw anyone with ID or autism
      Only saw Down syndrome once in while
      We never met anyone with juvenile diabetes. Now we also have that in the family.

    • Sullivan (Matt Carey) March 21, 2016 at 18:34 #

      The best evidence for what many would call a “true” increase comes from two studies. They explore the increased risk from older parents and the fact that families in America are having children later.

      But most people claiming an epidemic ignore that because it isn’t the classic environmental causation argument. It is, in fact, largely genetic. (although societal shifts like having babies later is environmental, but let’s skip that for now). Much like with Down syndrome, one *can* have a genetic epidemic whereby a genetic condition results from age of mother and/or father.

      With all due respect, you are partaking in what one parent/doctor/researcher used to refer to as the “string of pearls” argument. I think that the evidence is strong for an increase in autoimmune diseases. I think that the evidence is strong for autoimmune diseases to be a part of autism. I therefore think that autoimmune conditions are part of the cause of autism. Therefore I think that autism is actually increasing.

      Too many weak links to get beyond a hypothesis.

      “So it is easy to get into arguments about what is or is not autism or missed cases and as you know the behavioral definition has changed over time. ”

      Not just easy, it is imperative that someone claiming an epidemic address this question. Many try, but with major handwaving arguments. For example, “The CDDS only serves the most disabled, therefore it would be immune to an expansion of the autism diagnostic criteria”. Nonsense. As was pointed out by someone on the DSM 5 committee, California has a very low percentage of people diagnosed with Asperger syndrome or PDD-NOS. Why? Because Asperger syndrome or PDD-NOS does not qualify one for services. One need only look at the percentage of autistics who also have an ID diagnosis to see that there is a huge shift in the character of the autism population served by CDDS.

      • aenea March 22, 2016 at 11:46 #

        I completely agree that the anti-vax movement has derailed useful conversations about autism, the the same way that the ‘cure autism now’ movement has, people who waste time debating an ‘epidemic’, or the people who are so focused on early intervention ‘working’ that they never think about autistic people over 18, because early intervention will make everything ‘right’, won’t it.

        I see autistic adults every day (I’ve got 2 of them). Most of them aren’t in ‘supportive’ care, because you really do fall off of the funding/support cliff when you’re 18. A lot of high-needs people are being funneled into seniors’ homes, short-term hospital stays, or staying in group homes that are meant to deal with children under 18. Two of the big concerns in our area are very elderly parents living with their adult children- how do you transition someone to an assisted living facility at 60 years of age when their parents die, and what do you if a ‘child’ injures their caregiver? Another big concern in our area is young adult autistics who have nothing to do after high school ends. Ontario has decided to close sheltered workshops (like ARC), and there aren’t a lot of day programs in our area. There are a few that are fairly expensive ($2000 plus a month, disability support in our area for adults is around $1000). And those programs don’t accept anyone who ever lashes out, has meltdowns, or doesn’t play well with others. Ontario seems to think that instead of sheltered workshops the retail/manufacturing sectors are going to line up to hire people with special needs.

        We shouldn’t still be fighting about vaccines- that’s a given. It’s taken too much time and space for actual conversations about how best to support autistic people, and every minute we spend fighting about vaccines is a wasted minute. And more families and doctors and governments need to be thinking long-term about how to best support the autistic people in their lives. More ‘autism’ groups need to have more autistic board members, more government ‘task forces’ need to include adult autistics on their panels. There isn’t a government in the world that is prepared to support the number of autistic adults coming down the funding pipe in the next few years, and parents and taxpayers and a govt. official, hanging autistic adults out to dry isn’t useful at all.

      • Bill Chaffee November 8, 2017 at 03:32 #

        I have cerebral palsy which went undiagnosed for 3/8ths of a century. My symptoms were regarded as psychological. When I try to research CP I frequently encounter websites which use the phrase “your child”. They lead people to believe that CP is only a children’s issue. I guess the same problem occurs with autism. I was born in 1951. I was an 8 pound baby and my mother was only 5’1″ and had narrow hips. She said she doesn’t remember me being born and that she noticed forceps marks on the front and back of my head after I was born. I followed up by asking her if she remembered my siblings being born and she said that she did (I’m the third of five children). At one time it was common to use a combination of scopolamine and morphine during childbirth, which causes amnesia.

        Some of my symptoms can be confused with autism, such as being a social misfit. I also have gender dysphoria.
        I school I received failing grades on essay tests because I can’t write more than two or three words per minute for more than a few minutes. To the best of my knowledge I have never nodded or shook my head in order to indicate yes or no (some people seem to be able to do it effortlessly). The motor handicap could be mistaken for autism by the untrained observer.

        There is a lot of uncertainty with regard to a lot of statistics because of a lack of well trained diagnosticians.

  16. VMGillen March 21, 2016 at 18:33 #

    Sad – we see huge increases in longevity in every disability group – even people with Downs… too bad there aren’t decent earlier studies so we can track trends.

    I note the higher mortality rate for people with ID and ASD is tied to coincident epilepsy; people with epilepsy have a slightly higher risk of suicide, but over-all have normal lifespans…

    • Kassiane March 23, 2016 at 22:23 #

      SUDEP & other epilepsy related mortality are significant factors. And those with multiple neurodivergences, on more meds, in lower socioeconomic classes are at more risk of SUDEP.

      • wzrd1 March 23, 2016 at 22:46 #

        I wonder how many cases of SUDEP were unobserved status epilepticus.

      • Chris March 23, 2016 at 23:16 #

        While my son has not had a seizure since he was a year old, he does have a genetic heart disorder. Unfortunately it is one which is often not diagnosed until after “sudden cardiac death.”

        We were lucky, the doctor ordered and echocardiogram where the abnormal anatomy was discovered. So he got surgery and is on medication. Though cells still have abnormal electrical issues… something bad can happen.

        And something bad happening may occur if after we are gone if he ends up in a lower socioeconomic situation. We have set up supports, but unfortunately things can go wrong.

  17. Strawman March 22, 2016 at 00:27 #

    There was a “group home” at least 15 years ago in my home town. It was called the Epicentre where there lived quite a few people who needed supervision. There lived all sorts of people with all kinds of mental health issues and development delays. They were very unkempt with raggedy clothes, unwashed and rotten teeth. They would come onto the hospital every week for bloodwork because their medicines lowered the white count. These folks looked to be in their 40’s and 50’s. Of course some of them may have had autism with ID. If anyone is looking for older people with autism, they are in plain sight. Uncared for and living with any number of different diagnosis. As for the genetic inherited cause of autisms I don’t understand. Maybe more epigenetic. Autoimmune diseases do seem to be on the rise. What would cause a fetus to have duplication or missing genes? Older parents we were not

    • Strawman March 22, 2016 at 13:03 #

      Aena, that was well said. I completely agree. Thank-you.

  18. Ladyofroyalhorses March 22, 2016 at 07:52 #

    Reblogged this on Appalachian aspie part two..

  19. Bernhard J. Schmidt March 27, 2016 at 10:18 #

    Here you can find some reasons for the health-problems of autistic and a new appoach for understanding autism:


    • wzrd1 March 27, 2016 at 13:40 #

      Bernhard, when did eczema become a symptom of stress?
      For the rest, it’s a fair amount of oversimplification of an entire spectrum.

  20. Kris March 31, 2016 at 00:41 #

    Considering I figured I’d off myself or have an ‘accident’ well before the age of 25… this doesn’t surprise me much.

  21. Miilanna March 31, 2016 at 03:36 #

    Part of the shortened life expectancy is surely related to the issue of inferior medical care received by adult autistics.

    We seem to respond differently to some medicines, especially those which interact with sensory or cognitive processes.

    Most physicians do not understand the way autistics communicate, and (like much of the the rest of the NT population) assume we mean whatever they think we mean. This obscures accuracy in medical interviews and encourages them to not take us seriously, dismissing what are often very serious medical issues.

    Also because of communication differences, medical documentation tends to be less accurate. This interferes in obvious ways with medical care.

    Some medical “professionals” provide inferior treatment because they dislike us socially.

    • wzrd1 March 31, 2016 at 03:47 #

      You just broke down a number of communication and miscommunication issues, the closed with “Some medical “professionals” provide inferior treatment because they dislike us socially”. That is a wide reaching, extremely bold indictment of every medical professional on the planet.
      More probable is a dislike for miscommunication and some professionals intensely playing four hundred questions with a patient. That is something my wife can speak to, as she has severe dyslexia, which can muddle concepts being presented. That is why I am her medical interceptor, as I understand her through our mutual dyslexia and am fluent in speaking medically. That is where a patient advocate comes in, specifically, a clinical liaison, to bridge the divide in communications.
      That is one area we’re still not doing as well as we can be, in providing clinical liaisons. But, money is the mighty barrier. :/

      • Miilanna March 31, 2016 at 07:53 #

        I said “some” because that is what I meant. I have seen it personally, both as a medical professional and as an autistic adult patient.

        There are many good professionals, but the communication and interpretation issues are profound. Few autistic adults have access to advocacy of ANY sort. Your wife is fortunate.

      • wzrd1 March 31, 2016 at 14:53 #

        As I said, there’s a lack of will to spend on resources like clinical liaisons, as such “additions” turn into a new cost center for our businesses and medical practices and hospitals are indeed businesses.
        We really do need to figure out how to do better. We need to figure out how to balance the needs of health systems with the requirements of the patients who have communications issues, or we’ll continue to underserve them in ways that have deleterious effects upon their health.
        Just as I had to translate my wife’s “My back hurts” into what doctor would understand as an urgent situation, radiating back pain, urinary incontinence and paresthesia of the mons, suggestive and consistent with cauda equina and by the way, here is last year’s MRI. Initial neurologist treated the matter as non-urgent, failed to gain medical clearance for a repeat MRI to see what is going on and hence, the MRI was rejected. Our primary was quite irritated when that neurologist suggested that my wife see another doctor and we’ve terminated further treatment with that physician in favor of one willing to fill out the insurance company’s pain/dysfunction scale. Our primary filled it out and the MRI was scheduled, as well as a new neurological practice.
        Without that mediation, eventual nerve damage would leave her in a wheelchair, as priority of relating symptoms isn’t easily apparent in dyslexia.

      • giftbearer April 2, 2016 at 19:15 #

        Excellent point! There are not enough true patient advocates available to autistic adults without a conflict-of-interest. I’d really like to see money allocated for that because without that type of help many people just aren’t making it.

      • wzrd1 April 2, 2016 at 19:49 #

        Giftbearer, I’d not complain if my taxes went up to support such a worthy cause.

    • VMGillen March 31, 2016 at 13:41 #

      Also, many are taking a multitude of meds, with little or no attempt to coordinate for interactions or deleterious side effects – which is certainly part of the explanation for higher rates among people w/epilepsy.

  22. Kenton Schassberger April 1, 2016 at 18:28 #

    Many of we 60’s + autistics with Aspergers were not officially diagnosed till in our later 50’s and how we get treated is almost criminal. The only way some of us are recognized is by our behavior like our social media responses. Our responses are sign to all that have the training including cultural anthropoligists.

    • giftbearer April 2, 2016 at 19:16 #

      Very true!

  23. Ye October 6, 2016 at 19:01 #

    Autistic adult killed, along with 3 other special needs adults, in suspicious fire possible set by caretaker/owner of group home. Possible mass murder/suicide.. State officials covering up. http://www.latimes.com/local/lanow/la-me-ln-temecula-fire-20160927-snap-story.html

  24. James Newcomer November 2, 2016 at 03:36 #

    Getting into my 50s, ostensibly a “high functioning” autistic. My Dad, also high functioning, made it to his mid 70s however he committed de facto suicide at the end via the “Yogi Method” (self deprivation). This was after a stroke – my take is, he could not tolerate the cycle of staying in the rehab, SNFs, etc. After self deprivation, especially self imposed dehydration, his kidneys went out and he went for hospice, game over.

    When I compare my life to date with that of my Dad, I have experienced much more stress. He was a total savant – a patent machine (when I search his name, them come up one after the other). He got in the door into tech at precisely the right place and right time. So he had a cushion against stress we younger generations never could have. I’ve been on a treadmill since the end of high school – an endless stress fueled series of school, job, screwed up relationship, job, etc. The stress is now officially killing me. If I had to guess, heart disease will take me (this in spite of a good regimen of exercise and healthy diet) but there are a number of other opportunities. I won’t even need suicide.

    The relationship front adds insult to injury – what did I go and do, but of course, opposites attract so I married me a lady who’s OCD, looks down on the disabled, and has some anger management opportunities. “Look me in the eye!” is a lot more than a book title, it is my ongoing nightmare at home that I cannot wake up from.

    Yep, lots of autistics have had their lives cut short. Of this I can be certain.

  25. Steven January 6, 2017 at 08:04 #

    I’m a 31 year old autistic man who is only alive because I live with my grandmother. I smoke 3 packs of cigarrettes a day in hopes that I’ll get cancer and die before she does. It’s either that, or I die from hunger in the streets, homeless. God bless America!

    • Kelintx January 11, 2017 at 22:27 #

      Steven, look for some resources now. Is your parent aware that you are on the spectrum? Have you discussed what the plan is in case she passes away? Cut back on your smoking. Lung cancer is a painful disease and COPD is miserable too. Try to find some support groups in your area. Address any comorbid conditions such as ADHD, etc. The comorbid factors tend to make being on the spectrum miserable for some of us. If I ever come across a large sum of money, I will have a ranch for those on the spectrum with cabins when they need to recharge and a common area for eating, computers, etc. This will serve adults on the spectrum and provide resources for them. I see too many adults on the spectrum in need.

      • Steven January 14, 2017 at 20:16 #

        There are no resources. There are no support groups. At least not in the rural U.S.

        You only have access to “help” if you live in one of the biggest cities. Even then, the price is out of reach to anyone who’s not at the very least upper-middle class.

        Lung cancer is preferable to my “life” of no hope. I watched my Grandfather die of it, so I know how it is. The pain cannot possibly be worse than what I’ve already been through, and continue to go through every moment of every day.

      • Kelintx January 20, 2017 at 12:11 #

        You are correct about the lack of resources on the US. Most people in the US are morons anyway and get fed shit given to the by the mainstream media who focuses on severe cases or that people are the high end are mass murderers and such. There is NO funding to assist adults on the spectrum. Again, lack of knowledge on the part of most people. People tend to focus on children. They forget the children grow up but again people are fed garbage that all of those who grow up end up in institution such as Rainman. They are deceived and donate to Autism Speaks who are actually funding studies of prenatal testing for parents so they can abort the autistic child. They do not realize that a colleague in their office may be on the spectrum or the quiet kid in school. If it wasn’t for people like us then we would not have power or cars or computers or a lot of things because most modern inventions are by those on the spectrum. What part of the country are you located? Are you verbal? Are you on disability? Why are you miserable? I’ve been there myself. Do you have special interests of any kind. It is people like us that only can change this view the moronic people have about adults with Autism. It is people like us who can help others who are adults on the spectrum. Put down the cigs for now or cut back anyway. I’m going to be in a study to hopefully help other adults. Start focusing on what interests you. These comorbid creeps is what makes us miserable. For example, I had been extremely depressed to the point of doing myself in but found out that I have ADHD. Once I was on medication and was able to focus then my depression subsided for the most part. I’m also going to start going to a church. How rural are you? In other words, is there a town or city nearby and do you have access to medical or mental health services? If so, then you should be able to get some medication help and if you do look for a counselor then make sure they are familiar with Autism. My prayers are with you fellow autistic. I get email notifications when someone replies to this thread so I look forward to hearing from you some more. Cheers for now. Ttyl.

    • vmgillen January 19, 2017 at 22:05 #

      Steven, you have discovered some support right here – and there are many other sites out there. Support doesn’t just take place in face-to-face groups (for some of us, on line is easier, for sure). You don’t mention where you are, but if you’re in the United States check your State web site for developmental disabilities… also, ‘though you’re an adult, by Federal mandate every state has a “Parent to Parent” resource – and very often they can provide good connections. With ASD – and any other “dis”ability, it is ultimately your job to create your own reality.

      • Kelintx January 20, 2017 at 12:29 #

        The problem with a lot of people is reaching out is that they do not know where the resources are. They are few and far between for adults. It is ultimately your job to create your own reality is not exactly what I would tell someone on the spectrum. Some have stronger backing than others. I mean family support. Many of us who are adults don’t have the backing and we’ve been looked upon as the loser or black sheep of the family. They’ve been tossed in a corner and largely ignored by family members. Once my mom passes away then it will be just me traversing my way through life on my own. Some are able to create their own reality, some are not which leads to where are the old people on the spectrum? They are six feet under. Statistically, the average lifespan of someone with Autism is about 54 years of age. The exact cause is unknown but the lack of support and resources I presume play a large role in the statistics. 80% are either unemployed or underemployed. As a result, they generally are not financially able to get the healthcare they need. Undiagnosed illnesses such as diabetes, cardiovascular, hypertension, etc. go largely ignored. In addition, the comorbid factors come into play. Many die by suicide. So, please list examples on how Steven and others can create their own reality. You see for someone on the spectrum that statement equates to “suck it up buttercup”.

      • wzrd1 January 20, 2017 at 21:06 #

        For one utterly disempowered, one individual has triggered significant discussion and suggestions of variable worth in how to better that individual’s life.

        Let’s consider some factors in the “plus” column in the OP’s life. Communication is possible, there are many farther along the spectrum where communication is problematic to impossible. Communication is highly empowering, as one can ask for help, find friends to help, make new friends and even express one’s misery and fears. The latter can and will eventually find help, if that individual is persistent in seeking it.
        Yes, our society sucks at caring for the disabled, but we’re not a society that utterly ignores the disabled. I know, as I’ve deployed to cultures where the disabled were literally hidden in locked rooms, away from the view of all.

        On the “negative” column, the ability to travel is seriously hampered, so the individual would have difficulty in finding an environment that is more supportive. That can be mitigated to some extent via using the ability to communicate.

        If the OP does end up alone, with no help available, we have an extra room, food and an excellent physician. Word of warning, we do have a cat who is exceptionally affectionate. It’s a characteristic of the breed, Russian Blue.
        Well, off to the pharmacy, refill day.

  26. Glenn January 24, 2017 at 19:56 #

    i AM A 46 YEAR OLD Adult with Autism,,,I was once a Child with Autism,,,

  27. Glenn January 24, 2017 at 20:00 #

    Growing up in the 70s with Autism,,i was treated like pure crap,,,Now as an Adult in 21st Century i am treated like crap,,not a bit of wonder that we end up self destructing :-(((((((

  28. David Vandenberg April 4, 2017 at 05:50 #

    Maybe we are out there; undiagnosed . What’s the point of being diagnosed after a lifetime (60 years)of fitting in. Yes I’ve battled depression. Yes I’ve seen a psychologist for depression. I do still think of suicide; but I know that stress will get me first. So how did I survive? I married a great woman who excused all my problems. Worked at the same job for 35 years. Yes my job was my special interest. I have read thousands of research papers in my field of work. I am an expert,an innovator. I’m sad though. What could my life have been if I had known. If my parents had known. If my wife had known. If the psychologist who treated me in the 90’s had the knowledge to diagnosed my autism. I cry over the difference between what I am and who I imagine I could have been.

  29. Jess May 4, 2017 at 19:58 #

    I appreciate that you are one of the fewer neurotypical parents of autistic children who are actually willing to work with autistic adults. Not many do. I am a 35-year old diagnosed autistic adult, my husband is 45, autistic. My daughter is as well, she’s 10.
    I mean this with the best (you know how blunt we can be!), but I have not heard or seen anything about a shortened life expectancy. OK, yes, adults on the spectrum have higher suicide rates, but that is all I have heard. I believe that comes from the lack of services available to adult autistics, as it can be very depressing. I know of hundreds of autistics who have reached 50s and 60s. My point is not to prove wrong, necessarily, but to offer hope. With good support, as it appears you give, the chance of anything happening is not as bad as it may seem. We may seem like we don’t want the support often, but that is because we aren’t sure how to respond to it. We really do need it.

  30. Umar Butt December 28, 2017 at 15:35 #

    I am autistic and reading this worries me, not because I know it’s possible for me to have lived a third of my life already (I am 18, a third of 54) but because I already had the feeling something along these lines were true prior to reading this. I am tormented by family, friends and teachers and have been throughout my life, but not because they are evil but because they don’t understand me and unintentionally alienate me making me feel like absolute rubbish and I do that to myself. I can’t socialise in public even sometimes among friends or family leading to tears of depression, and due to processing information slowly and with background noise even worse, I mess up answering questions at home or school or mess up my exams which the consequences I don’t see the end of, mainly because I set the bar so high for myself by being naturally “talented” with numbers from a small age. I prefer being alone a lot of the time but in doing so feel so lonely and wished people understood me, and whenever I open myself to someone I trust or feel like I could talk to, I regret it instantly as they hurt me or betray me. Hearing the words “freak” and “issues” and being called the “Hulk” due to my meltdowns and anger issues only make me feel like those things, alienating me making me depressed always blaming it on my existence which isn’t my fault. I have no desire to self harm besides banging my head or hitting something to release the anger, but I mean I don’t cut for example because I am depressed, which I am greatly. But most days, especially the worst ones, the only thought ringing is “I want to give up” hoping there is a button I can press. I have no desire to inflict pain upon myself or to do suicide, because I hate physical pain and my religion doesn’t allow me to, not that I want to die at all because I love every other aspect, I still love my family and school life etc and I want to grow up and achieve my dreams. But the issue is I am in such depression where my brain just aches and I want to give up, translating as I want to die, without suicide. I hope I could just die and painless death or fall asleep and never wake up. Reading that those with no learning disabilities but are autistic die 9 times the rate worries me simply because it fits so well as to predict what is possible for people like me to do with no restrictions like some good aspects to life or religion. And I don’t know how much more of it I could take before I snap and break entirely going crazy, or may be pushed to suicide even more way before 54, that’s if I don’t die of heart disease or something along those lines created by stress which even now I am feeling, my brain hurts so much. I don’t want to die yet, especially so young, I just want this pain to end however. I just want people to understand and accept me. 😥

    • Chris January 2, 2018 at 16:23 #

      Is there someone, like a school counselor, where you can get resources to help you? We received a list of several from the local university’s Autism Clinic (which works with adults). One was this:

      I hope things get better.

  31. Elise January 18, 2018 at 22:59 #

    Wow, so good to read your posts. Not yet dead, but not exactly alive. I’m 63, french, had a hard life, know a lot about misery and starvation, had so many jobs, was considered as weird, special, strange, mad and stupid during all my life. Then, 2 years ago, I was listening to the radio and discovered autism : a shock that pulled me into sideration. My doctor knew absolutely nothing about autism. I spent months in searching a specialist, regarding autism, the situation in France is absolutely terrific. Very few specialists, most of them for children and teens. I finally had tests and the diagnosis, as a severe form of autism during childhood, with a relative evolution to High Functioning Autism, High IQ and VHIP + comorbidities. And then ? Discovering you missed your miserable life, that it seems that you are not stupid at all, that you have been used and abused, and not way back. Depressive ? No, lucid, and wild with anger : that it is probably why I am still living…. Hold on !

  32. Churchill March 7, 2018 at 15:47 #

    So instead of getting upset and taking a piss at everyone through your entire article, how do we fix it? Offer solutions rather than just ranting. Once an individual is born with autism, there’s no reversing it. So tell me angry one, how do we fix it?

    • Sullivan (Matt Carey) April 1, 2018 at 18:03 #

      You don’t see the irony at all in your comment, do you?

      What did you do other than be the “angry one”, “taking a piss” at me in your comment.

      Read through this blog. I’ve spent years not only suggesting but working on making making life better for autistics. All you do is wander the internet behind pseudonym attacking people.

  33. Audrey W Gardner September 28, 2018 at 06:10 #

    Hi! I will be 36 in December! I am a female from the US. I have autism, a learning disability and a mental illness. I have read several articles stating that the average life span for an adult with autism and a learning disability is between 36 years and 39.5 years. Thank you for the inspirational stories of people with autism living into their fifties, sixties and seventies. I love the data but it would be more helpful to provide proven suggestions to help improve quanity and quality of life! Thank you for your posts! Best regards!

  34. Theresa January 16, 2019 at 14:57 #

    I was a vocational rehabilitation counselor for nearly 5 years. I saw thousands of people with disabilities every year. Never once did I meet an adult over 30 with an autism diagnoses. I’m 32 and never knew a single autistic peer and I went to public and private schools with thousands of students. To deny the huge uptick in severely autistic people born in the 90’s and beyond, is dim. I’m not pro or anti vax but let’s be honest you have no real clue what damage they may cause on an individual basis. Also the pro vax crowd thinks if they shout the loudest they can silence the others.

    • Sullivan (Matt Carey) February 21, 2019 at 00:20 #

      “To deny the huge uptick in severely autistic people born in the 90’s and beyond, is dim”

      Wow, you claim to be a person working with disable people, and yet you stoop to using unintelligence as a slur.

      Either you are lying, or you’ve learned nothing about respect in your time with disabled people.

      • Katrine Estella October 31, 2019 at 17:08 #

        I am an autistic adult of 56 years of age who only got diagnosed with autism on the 13th November 2014. He are the issues that I have faced:

        A letter confirming my NHS autism diagnosis was not sent to my GP.
        It took 3 months to get the summary of my diagnosis sent to me
        It took another year to get my autism diagnosis report
        If I did not get support from advocacy organisations and individuals I would not have got my summary of my autism diagnosis or my autism diagnosis report.
        There were several errors in my autism diagnosis report.
        It took three years for my autism diagnosis to be added to my records.
        I was refused post autism diagnosis support because of my age.
        Nothing has improved in the way GP’s and reception staff in the way they approach me.
        I still have to wait for an hour in the waiting room to see my GP.
        It takes over a month for an appointment to see a GP or nurse.
        Pharmacy staff have not been made aware of my autism diagnosis.
        When I have blood tests or have out patient’s clinic’s my GP does not tell the hospital or clinic that I am autistic.
        Even when I am wearing clothing saying that I am autistic it gets ignored by GP and hospital receptionists as well other medical staff as well as Pharmacy staff.
        Waiting times for outpatients hospital appointments are still as long as before.There are no special needs dentists for special needs adults as they only cater for special needs children.
        I asked support from the autism professionals to explain to my oldest sister my diagnosis which they said that they would do but did not.
        It took me over a year to reveal my autism diagnosis to my oldest sister and she still has not accepted it as she criticizes my autistic behaviour (I do not mask even though I am female).
        Mental health understanding is none existent in Thurrock.
        I went to on a Cognitive Behaviour Therapy course which was not at all helpful (it worsened my mental health) as even though I revealed that I have been diagnosed and asked if he has had any training or experience working with autistic adults and he said no.
        He then revealed the reason why was because it was not worth it and that I was the only one (what about those with undiagnosed autism and those with don’t think about revealing their diagnosis or waiting to get an autism diagnosis or go through are still go through an autism assessment and have not yet been formerly diagnosed with autism) and that that he was asking me to speak to shop staff about my autism (which I am unable to do) and greatly underestimates the difficulties that I have.
        There are no autism specific support in Thurrock and the only NAS group in Thurrock is for parent’s and their school aged children.
        I have no living parents and only have two older sisters who live near by, one of them has a moderate to severe learning disability with cerebral palsy who lives in supported living accommodation (who has undiagnosed autism).
        There is an adult autism support group in Havering but they only support adults up to the age of 25.
        I live on my own in a council property.
        I have undiagnosed mental health disorders as the way that the mental health GP assesses people with a set of questions does not take in account of my autism and my difficulty in answering the depression verbal questionnaire as I am unable to identify my emotional difficulties and express myself clearly.
        I left school with no educational qualifications as I was not put forward for exams.I was taken out of school for three years at the age of 12 and 1/2.
        I have a very practically non existent employment history as I have had only 4 paid jobs that never lasted more than two weeks.
        I do not have my own transport and I don’t drive.
        I am unable to use public transport due to mobility difficulties, chronic pain and fatigue as well as severe sensory overload.
        I have fibromyalgia, medication for undiagnosed mental health disorders and medication for epilepsy.
        I have spent most of my life attending Job-clubs and attending various government run employment training and work experience schemes which were no help to me due to my undiagnosed autism.I have paid for an on-line dyslexia assessment which shows that I have considerable difficulties.
        I feel as an autistic older adult I have been forgotten about.
        In the 1960’s when my mother was a state registered nurse who had experience working in children’s wards and various hospitals, none of her medical books have had any reference to autism, I know as I read all the medical books that she had.
        The first time I heard about autism was in the 90’s.
        I live on my own in a council own property but there is a severe lack of understanding of autism, especially in middle aged adults who got diagnosed in their 50’s and older.
        Council repair contractors are not aware of my autism diagnosis and even when I reveal my diagnosis do not adjust the way that the talk to me.
        I never took any exams at school.
        I was taken out of school for two years because they said I go not cope with studying for exams.
        I have never been to university or taken an open university course.
        I have a practically none existent employment record, where I have had 4 paid jobs that only lasted no more than two weeks.
        I am unable to travel to shopping centres because of the lack of awareness and understanding of adult autism
        I experience severe sensory overload when I am at a shopping centre and supermarkets and as a result avoid them.
        I do not have any friends and I do not mask my autism.
        I was taken out of school once a week to attend a child’s guidance clinic in Stratford in London which was a very traumatic experience.

      • wzrd1 November 2, 2019 at 05:44 #

        I’ve dealt with the IT level spectrum of the overall spectrum.
        Were we in the same geographical area, I’d give you a lift up, clues and consensus notions to proceed forward and guidance, where when things get overly complicated, reassess slowly.
        In person guidance is easy, distant, not so easy.
        First suggestion, foul up, move on, which is hard for some.
        If you want general guidance, ask our kind host. CC the host, as I will, to ensure no shenanigans.
        Just paying it forward, again.

      • Katrine Estella November 1, 2019 at 09:36 #

        Hello, I have a wrote a post yesterday and it has not appeared. I am a late diagnosed autistic adult of 56 who only got diagnosed in November 2014 at the age of 51. It was done by the Basildon Asperger’s Service at Basildon Resource centre in the Basildon Mental Health Unit.


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