Ageing in autism

6 May

A new paper highlights the issue with geriatric populations in autism.

At present, one of the major challenges is that the majority of the currently older individuals with ASD has not received a formal diagnosis of ASD, and this would be dif?cult to establish using the currently recommended diagnostic assessments, because for many of them, neurodevelopmental history would be hard to obtain. The diagnosis of ASD in children involves both the parents and the child contributing…

You see, nobody working the field of geriatric psychology has any doubt that there is a large population of autistic people within the geriatric population:

Many adult and older subjects with ASD remain undiagnosed and thus are largely unknown to specialist services. [M]any have survived childhood and adulthood by either being fully supported by their family or holding jobs in
protected environment, enabling them to function ‘normally’, and thus escaping the ASD diagnosis. In support for this are the three recent case reports on diagnosing older people with ASD indicating that the standard clinical screenings used in childhood had to be modi?ed and adapted for ?rst?time diagnosis of ASD in older individuals.

As also published recently, it is becoming clearer that there is in fact, no ‘autism epidemic’ and that, in point of fact, research shows:

…nearly one percent of Britons older than 16 years have autism, a rate that is similar to that seen in children. Younger people were no more likely to be affected than older ones, however, which would have been expected if the condition were truly on the increase.

So what can we take from this? Being who I am and having the interests I have I take two main things:

1) Vaccines haven’t caused an epidemic of autism because an epidemic of autism does not in fact exist.

2) There is a large amount of undiagnosed adults with autism who need our help now. They are in community homes (group homes I believe they are referred to as in the US) or living with very elderly relatives. The majority are in situations where their autism is not recognised and not diagnosed. How do we help them?

The University of Newcastle held a Workshop Meeting ‘to reach a consensus on he need for new initiatives in this area.’ and came away with the following points:

1 Prevalence rates of older people with ASD (a prerequisite for planning service needs and placements)
2 Determine life expectancy, behavioural changes and cognitive changes with ageing in ASD
3 Data regarding health problems common in ASD, clinical assessments and treatment of seriously medically ill and frail older individuals with ASD
4 Information whether and how the characteristic clinical symptomatology of ASD change with age
5 Problems diagnosing older individuals with ASD not known to services and development of diagnostic tools for this purpose
6 Diagnosing cognitive impairment and dealing with challenging behaviour in nursing homes
7 Increasing need for advocacy and mental capacity assessments
8 Need to identify services, support and resources for older people with ASD
9 Design of adequate environment for older individuals with ASD
10 Neuroimaging studies in older individuals with ASD
11 Biobanking facilities (cerebrospinal fluid, blood/blood derivates and brain donations) and facilitating research

We should all be aware of the needs of elderly autistic people and try and find a way to help I think. How we should do this is vital. The first step must be the recognition that the idea of an autism epidemic marginalises them.

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10 Responses to “Ageing in autism”

  1. Laurentius Rex May 6, 2011 at 22:51 #

    Of course it shows the hypocrisy of science who have always excluded older “subjects” from research because we are presumably to decrepit and maybe too unco-operative to be classical research fodder.

    Naturally all the ageist prejudices and perspectives will remain in force denying us humanity as lean and slippered pantaloons.

    I am not going gently into that goodnight for sure I shall grow to be even more disgraceful than I already am and these young puppies had best not forget that.Yep if they ever want my cerebro spinal fluid I shall spike it for them just to be mechant, that’ll teach em!

  2. Harold L Doherty May 7, 2011 at 00:40 #

    From one study you conclude definitively that there is no autism epidemic. And yet you ignore the conclusion of the CDC experts who have concluded that only approximately 50% of the dramatic increases in autism diagnoses are accounted for by diagnostic definition change, increased social awareness, and diagnostic definition in pursuit of alleged autism services.

    Face it Kev you believe what you want to believe. Hopefully few, other than your fellow ND faithful who read from the same script as you anyway, will be misled by your opinions.

    • Sullivan May 8, 2011 at 00:36 #

      Harold L Doherty,

      I respond even though I have noticed that you tend to do drive-by commenting. You post a comment and then leave.

      The evidence against an epidemic is not “one study”. Many studies have been discussed.

      “And yet you ignore the conclusion of the CDC experts who have concluded that only approximately 50% of the dramatic increases in autism diagnoses are accounted for by diagnostic definition change, increased social awareness, and diagnostic definition in pursuit of alleged autism services.”

      Let’s take this response in parts:

      1) You are not referring to the CDC experts, you are referring to the team of Peter Bearman at Columbia. In a series of studies (another just out), they have been able to estimate a number of social influences on the rise in autism prevalence. When added together–complete with an estimate of about 10% being due to a non social cause (increased age of parents, a “real” increase in prevalence)–his team came up with about 50%.

      What many people seem to take from this is that (a) the search is done and there are no more influences to be quantified and (b) that all sources of increase can be quantified.

      Is that “seeing what you want to believe”?

      Consider: how do you quantify the effect of news stories and TV? The “awareness” effort? How do you quantify the increase in diagnosticians? These are but two quick examples.

      I also believe you have the current estimate for the prevalence of intellectual disability incorrect in many of your recent statements. The CDC estimate varies by state, but the average is about 41%. This number is limited by the methodology used. The CDC uses a review of existing records. Autistics who are not receiving special education services or who don’t have the medical ICD-9 codes they are looking for will be missed. Are you aware of that?

      Data on cognitive functioning are reported for sites having IQ test scores available on at least 70% of children who met the ASD case definition. The proportion of children with ASDs who had test scores indicating cognitive impairment (IQ ?70) ranged from 29.3% in Colorado to 51.2% in South Carolina (average: 41%). In four of the six sites (Alabama, Arizona, North Carolina, and South Carolina), a higher proportion of females with ASDs had cognitive impairment compared with males (Figure 3), although Arizona was the only site for which the proportions differed significantly (p<0.05).

      http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm

  3. dr treg May 7, 2011 at 00:42 #

    Autism is turning out to be rather similar to celiac disease which was considered to be a disease of infants but now is recognised to affect 1 in 100 adults.

  4. Rachel May 7, 2011 at 02:44 #

    As an adult diagnosed at 50, I want to thank you for this post. It’s about time that the larger autism community started talking about autistics who have struggled through a lifetime without a diagnosis.

    It’s bad enough to be invisible to the larger world. It’s even worse to be invisible within the autism community. Thank you for acknowledging how many of us are out here.

  5. Kev May 7, 2011 at 07:28 #

    From one study you conclude definitively that there is no autism epidemic.

    No, _they_ concluded – I reported on it. Do you have any _science_ that demonstrates their science is wrong?

    And yet you ignore the conclusion of the CDC experts who have concluded that only approximately 50% of the dramatic increases in autism diagnoses are accounted for by diagnostic definition change, increased social awareness, and diagnostic definition in pursuit of alleged autism services.

    Sadly Harold you don’t seem to be paying attention. One of the points of this study is that up until now, the prevalence of older autistic people has been utterly ignored – even by CDC experts. It is quite clear amongst diagnosticians that there is a very large group of geriatric autistic people. You ignoring that fact won’t make it disappear Harold.

    Face it Kev you believe what you want to believe.

    Nope, I believe what the well conducted, peer reviewed, journal published science says. I have no idea where _your_ beliefs come from.

  6. jrbwalk May 7, 2011 at 15:44 #

    Kev, they need to do a study as to whether any of this crap is going to lead to a lifestyle improvement or more scientists’ kids attending Ivy League schools.

    Oh, shoot, am I being irrational??

    The village idiot

  7. vmgillen May 9, 2011 at 18:05 #

    A diagnosis is not a form of self-validation. Indeed, it primarily serves as a shortcut for billing, which can also allow researchers to take shortcuts in their studies (often invalidating their research due to the lack of etiology)… similarly, for geriatric populations – if they are already “in the system” but lack an ASD diagnosis, they should already be getting services based on the presenting conditions (if they are or aren’t is a whole ‘nother issue…) and if they aren’t already identified and “in the system” what does a formal diagnosis afford? Will professionals now have the opportunity to make (and be paid for making) an elderly curmudgeon’s life miserable because they aren’t “outgoing” in accordance with social norms?
    Last point: Eden, in Princeton NJ, has been studying geriatric populations for about a quarter-century…

  8. Stuart Duncan May 9, 2011 at 20:15 #

    Harold, I’ve seen you rip apart the CDC for their findings on vaccines, thimerosal, autism studies and so much more but they give you one number that you like and suddenly the CDC’s conclusions shouldn’t be questioned.

    That “conclusion” is like an unwritten law… it’s more of a guideline. No one, not the CDC nor anyone else, is able to conclude with absolute certainty what does and does not account for the total make up of all new numbers of diagnosis.

Trackbacks/Pingbacks

  1. Autism Blog – Ageing in autism « Left Brain/Right Brain | My Autism Site | All About Autism - May 7, 2011

    […] Read the rest here: Autism Blog – Ageing in autism « Left Brain/Right Brain […]

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