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

75 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.

  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.

    • 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?

  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.

  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.”

  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.

  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.

  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


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