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Guest blog: Cognitive dissonance

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Emily Willingham
13 December 2013

Each time my son, who is 12 years old and has autism, meets a new doctor, he hears the same awkward question, addressed not to him but to me: “So, he’s high functioning?”

The question communicates the assumption that the major concern and predictor of future success for a person with autism is cognitive function — and the assumption that my son’s function is sufficiently intact for me to respond “yes” when someone tactlessly asks that question in front of him. But how relevant is it?

Intelligence quotients (IQs) and severity of symptoms and manifestations can vary widely among people with autism, but the common thread obviously is the autism itself and the core deficits that accompany it. As the results of two studies published over the past few weeks emphasize, autism — along with the key deficits in social communication and interaction that define it — deserves more focus than the other variables that lend the condition its ‘spectrum’ metaphor1,2.

This is not entirely news. Studies of children with autism suggest that average or better cognitive abilities are not enough to ameliorate the social deficits that accompany the disability3,4,5. These reports consistently find that the quality of life for these children is much worse than that of their counterparts with other diagnoses, such as attention deficit hyperactivity disorder (ADHD). Now research in older populations — teens and young adults — confirms that some things don’t change much after childhood for people with autism.

Mediocre measure:

The first new study, published 10 October in Comprehensive Psychiatry, found that young adults with autism experience a relatively poor quality of life compared with those who have other psychiatric diagnoses1.

Using questionnaires, the researchers characterized the quality of life of 169 adults with autism in the Netherlands and 85 age-matched counterparts diagnosed with ADHD, 83 with disruptive behavior disorders and 85 with affective disorders such as depression. They looked at objective measures such as marital and employment status, as well as subjective ones such as general mood and level of satisfaction with social relationships.

The participants with autism fare worse on both objective and subjective evaluations than those diagnosed with the other conditions, the study found. They are also more likely to be single, less educated and living with their parents than the participants with other diagnoses.

Even when the researchers compared highly educated and less-educated adults with autism, they found no subjective quality-of-life differences between the two groups. The takeaway is that even adults with autism who have above-average intelligence and are highly educated still struggle with aspects of life that many adults take for granted, such as living independently or being in a committed relationship.

In the second study, published 25 November in Autism2, researchers reviewed daily-living skills in 417 teens who participated in the Simons Simplex Collection. (This collection of data from families that include one child with autism and unaffected parents and siblings is funded by the Simons Foundation, SFARI.org’s parent organization.)

The teenagers all carry a diagnosis of autism spectrum disorder and are all of at least average intelligence. Crunching the numbers, the investigators found that half of the study group has deficits in skills of daily living and that factors such as IQ, severity of autism symptoms and age are limited as predictors of success in acquiring the skills needed to live independently.

These findings, which agree with results from other studies in children, suggest that cognition and education levels are perhaps not as important as researchers have thought for people with autism when it comes to life satisfaction and the ability to live independently. Indeed, other work has indicated that a high IQ can exacerbate some negative aspects of autism, such as anxiety, and that IQ can be an inaccurate metric when evaluated in people with autism.

For autism research, measures of success and function might better be tied to what is, after all, considered to be a core deficit of autism: social communication challenges and impairments. For people like my son, the answer to the question, “Is he high functioning?” isn’t the one the doctor probably has in mind. Yes, my son has good cognitive skills. But his ability to respond to cultural and social demands and expectations is what defines his functioning — and his autism. The doctor should really ask my son, “How satisfied are you with your quality of life?”

Emily Willingham is a biologist and a regular contributor to Forbes magazine.

News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.

References:

1: Barneveld P.S. et al. Compr. Psychiatry Epub ahead of print (2013) PubMed

2: Duncan A.W. and S.L. Bishop Autism Epub ahead of print (2013) PubMed

3: Lee L.C. et al. J. Autism Dev. Disord. 38, 1147-1160 (2008) PubMed

4: Bastiaansen D. et al. J. Am. Acad. Child. Adolesc. Psychiatry 43, 221-230 (2004) PubMed

5: Green J. et al. J. Autism Dev. Disord. 30, 279-293 (2000) PubMed

 

 

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Comments

Name: MissMillion
14 December 2013 - 9:10AM

I quite agree. I have 2 sons diagnosed with ASD (and another one submerged in the system). Eldest is HF and in a great AS school placement but it is assumed he will fly afterwards and certainly he won't fit anyone's criteria for help. But he gets HR Care from DLA and for very good reason: the only response he hs to a lie challenge involves hitting a family member. Or scratching them, biting them, throttling them.... you get the drift. This means that at 14 he is still not allowed out alone, and that the whole family has periods of lockdown on a regular basis.

My other son is diagnosed with HFA and yet shuts down at virtually anything; his brother scaring him, a request to put clothes on, anything. But his academic level (about that of an 8 year old so 2 years behind) means there is a 50% chance of no school for him. Not because of the LEA, they'd consider independent and are being helpful, but just because this year there are twice as many applicants as children for the few suitable places. The LEA are building, but too late for him.

And there's me- in diagnostic system. I can write you a decent piece of scientific research but I'd give that up to be able to manage the house without husband's constant support. Or understand the subtext in conversations that can make me feel as if I don't speak my native language.

Someone said to me at university, s a passing comment, that e should drop IQ and focus on functioning level. They are one hundred percent correct. That is what matters. Both within the ASD world and without.

Name: Troy
14 December 2013 - 7:09PM

The question I would like answered: How can we help our children, be they school-aged or adults, have a good quality of life?

Name: Harold L Doherty
15 December 2013 - 10:39PM

Emily Willingham and MissMillion both indicate that they have children diagnosed/assessed as HFA. My son, now almost 18 years old, is Low Functioning Autistic and Intellectually Disabled. Neither EW nor MM have any personal life experience with severe, low functioning autism and intellectual disability on which to based their conclusions. Nor do they have any professional autism expertise. Neither of the two new studies reference by Emily Willingham involved participants who were low functioning autistic persons or persons with autism disorder and intellectual disability. Neither of them indicate in their comments that they have any understanding of the challenges presented when a person has autism disorder AND intellectual disability. This article is based on no serious study or on any common sense understanding of real world functioning challenges facing children and families with severe autism disorders and intellectual disability. It is harmful in helping suppress public understanding of the real world challenges faced by persons with ASD and ID and their families.

Name: richard @ nasa
15 December 2013 - 11:12PM

Its hard to say what spin the author of this article intended. Also difficult to imagine what those who designed these studies thought they were accomplishing. I have to agree with harold though-the mere fact that those who participated in this study could answer these questions with any degree of clarity says these studies do more t harm others than they do to help the aspies.

Name: Emily Willingham
16 December 2013 - 5:32PM

The studies addressed the question of whether or not being intellectually able while simultaneously autistic was related to quality of life and life skills and found that it was not a good predictor of either. That's important information because of a tendency--illustrated here--to dismiss intellectually able autistic people as needing no attention or support as adults. Nothing about these studies dismisses the relevance of being intellectually disabled, as that factor has already been demonstrated to be associated with life skills acquisition and independent living; the authors asked the question of what happens for people who are not intellectually disabled but who are still autistic. Both populations of autistic people--which together encompass the entire population of autistic people--are important. The ability to answer questions is not harmful to autistic people.

Name: Autism Families
17 December 2013 - 11:30PM

This article exposes the pragmatic knowledge gap between researchers and say families and community disability groups that advocate and provide direct support to children and adults with a range of needs.

Quality of life for many children, adults and their families surround the usual day to day requirements we are all familiar with, education, employment,housing,transport, finances ,health and belonging / relationships.

Varying factors will operate and impact on individuals in differing ways for instance many adults with ASD speak to anxiety and depression impacting on their lives , whilst others are concerned with the development of a loving relationship with a partner.

Families of young children may be more concerned with education /health matters such as the well evidenced relationship between GI /epilepsy.

I must admit I haven't come across many families talking about the impact of IQ.

Name: Matt Carey
19 December 2013 - 7:42PM

My child is autistic with signficiant ID and other disabilities. Why people think that's important in order to discuss this issue is beyond me.

Do I find the information in the above article and the studies cited to be useful? Absolutely. Is it surprising? No. Autistics have greater challenges than others with similar IQ's (leaving aside the difficulty in measuring IQ in autistics). A simple extrapolation of these resuls tells us the also unsurprising concept: autistics with ID have a different and largely greater set up challenges than those with ID and no autism.

Another non surprising extrapolation is that stratefying autistics by IQ (or functioning levels) is a poor approach. It isn't difficult to read that message in the above article.

The conclusion of the article can be only sightly modified for those representing nonconversational autistics--the doctor (or whoever) should consider asking the caregiver, “How satisfied is he/she with his/her quality of life?”

Fairly simple.

Name: Rose
21 December 2013 - 12:54PM

Still, I would not wish to trade my son's autism with verbal communication and average IQ for a more "satisfied" child with no language and severe sensory problems. I would think it would be a lot tougher life, and nobody would choose a more difficult path for their child if they were able. I guess there is something I'm not getting. I wouldn't love him any less, he'd still be my son. Is it bad for me to admit how relieved I was that Benno didn't regress?

I think what is happening is all parents want their children's suffering to be given regard. Autism makes it tough. But I think we disregard the challenges of severe autism by making it all seem similar.

Name: Anonymous
23 December 2013 - 2:43PM

Matt Carey stated: "My child is autistic with significant ID and other disabilities. Why people think that's important in order to discuss this issue is beyond me." That is quite a comment Mr. Carey and I admit I am shocked by it. Intelligence is obviously relevant to any discussion of real world functioning. Ask the parents of children with severe autism disorders and profound intellectual disability about that issue when their child leaves a secure environment and wanders away into traffic, deep water or never to be seen again. These are just some of the obvious ways in which intelligence can impact on daily functioning and daily living skills. Frankly I am skeptical that your child is truly intellectually disabled if you are so unaware of the impairments of daily living skills severe IQ limitations can impose and the aggravation of communication and self injurious behavior to which they can contribute.

Name: Emily Willingham
24 December 2013 - 3:17AM

"Frankly I am skeptical that your child is truly intellectually disabled if you are so unaware of the impairments of daily living skills severe IQ limitations can impose and the aggravation of communication and self injurious behavior to which they can contribute." Unlike you, Matt has posted using his real name. It is easy to read Matt's years of writing on his blog, Left Brain/Right Brain and learn about his representation on the IACC and confirm this information. What reason do you have to doubt him in the first place? I've met him and his son personally. He's absolutely aware. There really is no grace within the autism community sometimes.

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