Another window opens

Early diagnosis of autism brings obvious benefits. It means you can make an early start to understanding your child and meeting their needs. Early intervention is generally agreed to be A Good Thing. Some people take it further and argue that early intervention is The Only Thing. There is supposed to be a limited window of opportunity while the young child’s brain is still developing. During this time intensive behavioural interventions are supposed to have the best chance of success. Success in this context usually means recovery or normalization in which the child becomes indistinguishable from their peers and loses their diagnosis.

There are several reasons to question this scenario. E.g. the window is larger than we think. Brain development continues into adolescence. People who suffer accidental brain damage often manage to regain lost functionality despite loss of brain cells. Brain cells can regenerate, even in adult life. How this relates to autism is not clear cut. But if our brains can change and develop throughout our lives we should expect change and development in the brains and lives of autistic people as well.

I have seen this in the children I teach.  Severely autistic 3 year olds in our nursery  often make amazing progress as they develop and mature. Their degree of cognitive impairment seems a more important predictor of future outcomes than the severity of their autistic symptoms. I see regression as well, especially in the teenage years when the pace of change can trigger all sorts of crises.  It is often temporary, with balance restored by the time they leave us as young adults.

All of this is anecdotal – the impression gained from a quarter of a century in special ed. But a recent study, Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder,   provides data to support my impression and extend it into adult life.

Paul Shattuck and his research partners studied a group of 241 autistic people over 54 months. It was a varied group, ranging in age from 1o to 52. The mean age was only 22 so the sample must have contained proportionately more younger than older autistics. The abstract refers to subjects with an autism spectrum disorder and so presumably includes subjects across the spectrum. We learn that 69 per cent have some degree of mental retardation, which suggest there were rather more people with Autistic Disorder than with PDD-NOS or Aspergers.

According to the abstract and the press release from George Washington University the significant findings were that:

  • Although many individuals’ symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms.
  • Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time.
  • Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.

Why some people improve is being investigated as part of the ongoing study. But as it stands this is tremendous news. It means that parents of children who get a late diagnosis have not necessarily missed the boat. Parents of newly diagnosed children also do not need to rush into anything. The window is bigger than you think. Take time to gaze into the window. Learn about your child and choose wisely from the range of options before you.  

This is also good news for autistic adults. The older ones made the most signficant gains. Growing up might be hard but being a grown up is better.

I only hope that the numpties behind anti-vaccine outfits like Safe Minds, Generation Rescue and NAA do not resort to the same lies that they heaped onto Paul Shattuck the last time he published a piece of scientific research that contradicted their prejudices.

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17 thoughts on “Another window opens

  1. “Their degree of cognitive impairment seems a more important predictor of future outcomes than the severity of their autistic symptoms.”

    You separate cognitive impairment from autistic symptoms? My son is autistic, Autism Disorder, with cognitive impairment. Many children with Autism Disorder, as opposed to Asperger’s, demonstrate cognitive impairment. According to the Candian Psychological Association submission to the Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology
    November 9, 2006 (Canada)

    “Symptoms and Impairments:

    • Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. Persons diagnosed with
    Asperger’s Disorder have average to above average intellectual functioning.”

    http://www.cpa.ca/cpasite/userfiles/Documents/advocacy/autism2206.pdf

  2. Re the Canadian Psychological Association’s submission to the Senate committee, they provided a total of five references for their entire brief, not one of them from a peer-reviewed journal.

    According to their brief, the CPA primarily relied on one 2003 non-peer-reviewed paper which (I’ve read it) in turn provides not one peer-reviewed source for its statistics and information (repeated uncritically by the CPA) about intelligence in autism.

    Looks like the CPA has adopted the autism advocacy position that autistics don’t deserve recognized standards of science and ethics.

  3. I know with my son that if he were tested on his levels of understanding connected with the spoken word he would appear cognitively disabled (I say appear because he may know what’s being said, just be unable to express it). However, in areas of non verbal puzzle solving, eg jigsaws or colour matching he scores significantly above the average of children his age. A friend of mine whose daughter is ten and would be classed by most professionals as low functioning in most areas is very clever at being able to work her way round a computer, set up her marble run and various other things. Her mum says she is “very clever in spite of her difficulties”. Another mum I know whose son would also be classed as low functioning in most areas is able to read and has very good receptive language.
    As for Aspergers, well, again it depends on what areas you’re going for. I have above average intelligence with regards to written verbal. I’ve got a good long term memory and I read a lot so things were bound to sink in :). But my adaptive skills and my non verbal skills fall well below average. I can tell you about the Pendle Witch Trials, I can’t change a lightbulb, no matter how often I’m shown. I can write a story about a murder mystery set in a Roman military camp, I can’t tie my shoelaces properly, remember I shouldn’t shove all my clothes in one drawer, thus breaking it and score very low in the non verbal parts of IQ tests.

  4. Ah, another recognized professional body that Ms Dawson “humbly” disagrees with. Add that to everyone involved with the Association for Science in Autism Treatment, the MADSEC report etc etc.

    My son has Autism Disorder. He is cognitively impaired. It is obvious that Ms Dawson is ashamed of lower functioning autistic persons like my son on whose behalf she purports to speak.

  5. Harold,
    I am still left dumbfounded trying to figure out what the point of your complaint in reponse #1 even is.

    Cognitive ability and the number of exhibited symptoms aren’t necessarily a direct relationship, but what Mike points out (I think) is that it is likely that those who have not found a way to deal with their frustrations, or the overload presented to them by their environment, will exhibit more ‘autistic symptoms.’ I agree that the more cognitively able might be more malleable, and therefore May have already been shown methods to deal with overload or frustration.

    As to your objection to what Michelle has posted, I don’t see her showing any shamefulness, she appears to be pointing out the unreviewed nature of the information being relied on.

    I get the impression from the varied postings of yours I have read on many blogs that you are carrying some kind of chip on your shoulder about people that are wanting to get Peer Reviewed, Evidence Based Interventions really up and running versus what others classify as either Unproven, Charlatanism, Woo or Quackery.

    Now has ABA worked to help someone lose his diagnosis yet?

  6. Otherwise if no kind of therapy has helped at this point then What services should the Parliament and PM be being Lobbied for, Respite Care services?

  7. Hi Mr Doherty,

    I’ve taken the position that autistics deserve recognized standards of science and ethics. E.g., I think autistics are worth the bother of slogging through and citing primary sources. According to you, this means I’m ashamed of autistic people.

    Sorry, I’m afraid I don’t follow your logic.

    I think your son Conor is totally cool. But I’ve never claimed to speak for him, or for autistic people in general. Your own certainty that I have is interesting, in that it is totally unfounded in evidence, and there is a lot of easily available evidence to the contrary. Therefore, you have done an excellent job of informing us about your own standards and ethics.

  8. I don’t understand either one of Harold’s points. Maybe I don’t understand what his terms mean. It would be helpful to me, Harold, if you could explain the following:

    What do you mean by cognitive impairment?
    What do you mean by severe autism?
    What do you mean by low functioning?

    If I knew, I would probably understand your points better.

  9. Cognitive impairment, as measured by standard tests is usually taken to mean an IQ < 70. Around 70 per cent of children diagnosed with DSM-IV autistic disorder in the UK have an IQ < 70.

    Low functioning and severe are descriptive terms with no diagnostic validity. I used the term high functioning autism in my book to refer to the majority of autistic people who are out there, trying to get by in mainstream schools and society. Their needs as autistic people are often ignored or misunderstood because their level of functioning masks their level if need.

    Even within the special school population with which I am most familiar, the majority of autistic pupils are, in my experience, verbal, have adequate self care skills, and given adequate support, should live independent lives within the community.

    I am also aware of autistic people who have no significant cognitive impairment who need significant support in matters of daily living. I no longer believe that terms like high functioning and severe are adequate to the task of capturing the complexities of autism.

  10. Yes, what the heck is Harold’s point? Michelle made some statements regarding the lack of peer review of some papers, and Harold said something totally nonsensical and unrelated. Can you address the points made for once Harold?

  11. Joseph,
    Harold’s point is, as always, that without early intervention (specifically Early Intensive Behavioural Intervention) there is no hope for autistic children. Prometheus discusses this type of belief in his latest blog, under the heading of The Myth of Developmental Stasis.

  12. Thanks, Mike, for taking the time to answer my question. Unfortunately, applying your definitions doesn’t render Harold’s comments intelligible.

    I *think* that what Harold is saying is that the more autistic a person is, the more “cognitive impairment” the person has.

    Harold, did you hook up with the People First organization that Michelle Dawson told you about? They may have an infrastructure for helping institutionalized people with cognitive impairment with self-advocacy. That’s something you want to be involved in, right?

  13. Hi! I just have to say that I’m American but living in Germany. I’m not sure about chelation, just because it sounds so harsh and I also wonder about the long term effects. Here cildren are not automatically tested for lead poisoning, so I don’t know about my daughter. How come know one mentions amalgam fillings in the mother’s teeth, or flouride? aren’t tere many toxins that could be responsible?
    My issue is, however, that my daughter has had chronic diarreah and loose stools her whole life. Her pediatrician dismissed the idea until finally I got him to recommend a pediatric gastroenterologist who tested her for “everything,” including celia and lactose intolerance. He found nothing, although he also acknowledged her bloated belly.
    My daughter was not referred to the dev. psychologist by my dootor without my insistence. Not one doc mentioned that a huge number of autistic kids have GI problems. NOT ONE. Only googling and finding support forums made me realize that there could be a connection.
    I have not restricted my daughter’s diet, since she was neg on the food intolerance tests, but I have been giving her a children’s multivitamin daily, which has improved her behavior a lot. Not cured, but made a noticable difference. I’ve even stopped giving them to herfor periods of time and noticed regression. Not one doctor suggested this to me. I found out on the forums. My daughter actually eats a heathy diet. She is not a picky eater. i guess that the explosive, loose stools are at least a sign that she isn’t absorbing nutrients properly.

    But I am a skeptic, so I wouldpersonally be a fraid to go the DAN! route, but the lack of help from the med community who seem to think autism is only psychological. A little bit of acknowledgement,interest and care from the medical community would go a LONG way in keeping people from seeking out quacks.

    Please, Doctors, give a hoot! Listen to the parents! At least telll us that not enough info is out yet! Make studies! Don’t only refer us to psychologists, even though that is also important! Help us out! LISTEN. CARE.

    The developmental psycholigist here even referred me to a Homeopath!

    Mary

  14. Mary

    lots of parents report problems getting doctors to recognize their autistic children’s health needs and treat them. Nobody has yet done the studies to find out how widespread this phenomenon is or whether it is more widespread for children with disabilities. But it does seem to act as a recruiting sergeant for DAN

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