Autism In Adults: A Survey - Part 2: Executive Dysfunction

This is a continuation of my series on a survey I did in 2012, and am only now analyzing the results. To get background information on the subjects and methods of this survey, look at part 1. To look at alexithymia in autism, see part 3. To read about reactions to eye contact, go to part 4, and to read about autistic internal experiences, see part 5. To read about functional language, go to part 6, and lastly, to read about independent living skills, go to part 7.

In this section, I will discuss questionnaire results regarding one area of common coexisting difficulties - executive dysfunction.

Executive dysfunction was assessed using the Frontal Systems Behavior Scale (FrSBe), a 46-item assessment commonly used for adults with neurodegenerative disorders and brain injuries. The questionnaire is normally informant report, but was adapted to self-report by changing the wording of items to first person.

Scores on the FrSBe ranged from 24-93, with a mean of 67.11+/-15.610 (higher scores mean more impairment). Although I couldn't find a cut-off score for this scale, this mean is slightly higher than both pre-Huntington's (mean 59.6) and normal control (mean 54.8) participants in this study, but much lower than participants with a variety of neurological conditions (means from 98.63-140.9) in this study. On balance, this comparison would seem to suggest that the typical participant in my study had mild impairment on this scale, although some were well in the normal range and some had scores typical of individuals with early-stage Alzheimer's disease.

The FrSBe items are divided into three subscales - apathy, disinhibition and executive dysfunction. Apathy items reflect a failure to do activities and a general lack of motivation; disinhibition reflects unusual, socially inappropriate and impulsive behavior; and executive dysfunction reflects disorganization, poor planning and poor self-monitoring.

On the 14-item apathy scale, participants' scores ranged from 11-33, with a mean of 22.66+/-5.439. Compared to the same studies as before, this score is substantially higher than pre-Huntington's (mean 13.7) and normal control (mean 11.7) participants, but lower than the mixed neurological conditions group (means 35.6-48.6). This suggests that many of my participants had mild struggles with apathy and lack of motivation.

On the 15-item disinhibition scale, participants' scores ranged from 6-36, with a mean of 17.85+/-7.313. This score is similar to the pre-Huntington's (mean 13.7) and normal control groups (mean 18.8), and far lower than the mixed neurological group (means 27.4-34.5). This suggests that most of my participants did not have significant difficulty with disinhibition, although the highest scorers had scores similar to neurologically impaired adults.

Lastly, on the 17-item executive dysfunction scale, participants' scores ranged from 6-40, with a mean of 25.8+/-7.115. This score is substantially higher than both pre-Huntington's (mean 19.3) and normal control (mean 24.3) participants, but lower than the mixed neurological conditions group (means 41.3-57.8). This suggests that many of my participants had mild struggles with organization and self-monitoring.

I assessed intercorrelations between the FrSBe subscales and found that executive dysfunction scale was significantly correlated with the other two subscales, which were not correlated with each other. In addition, the FrSBe apathy scale was negatively correlated with age (r = -.376, p = .018), although an ANOVA by three age categories was nonsignificant (p = .068).

There were no significant gender differences, but FrSBe total and executive dysfunction scores were significantly higher in the non-white participants (total p = .018, executive dysfunction p = .006), with FrSBe total means of 65.00+/-15.186 vs 84.25+/-5.500 and executive dysfunction means of 24.81+/-6.675 vs 34.75+/-4.425. However, since there were only 4 non-white participants, this should be replicated with a larger sample size.

Next, I assessed the correlation between AQ and FrSBe. The AQ total score was not significantly correlated with FrSBe total or any of the FrSBe subscales. However, FrSBe total was positively correlated with AQ attention to detail (r = .424, p = .011) and communication (r = .469, p = .004).

AQ communication was also significantly positively correlated with FrSBe disinhibition (r = .339, p = .035) and executive dysfunction (r = .411, p = .010), Meanwhile, AQ attention switching was positively correlated with FrSBe apathy (r = .357, p = .025) and AQ attention to detail was positively correlated with FrSBe executive dysfunction (r = .474, p = .003).

Autism In Adults: A Survey - Part 1: Background and AQ

In 2012, I posted a self-report autism survey to the Wrongplanet forums. I got a good turnout, but ran into some issues with a couple of the measures I used, and ended up running out of spoons and abandoning the survey. Just recently, I decided to get back to the survey and finish analysing the results.

This is part 1 - to see an analysis of executive dysfunction in autism, go to part 2. To see an analysis of alexithymia in autism, go to part 3, to read about reactions to eye contact, see part 4, to read a discussion of the internal experiences of autistic individuals, go to part 5, and to read about functional language issues in autism, see part 6. Lastly, to read an analysis of independent living skills, go to part 7.

I got 45 respondents in total. Their ages ranged from 17 to 60 years, and 88.9% reported their ethnicity as white. The gender ratio was different from most autism samples, since 53.3% identified as female, 35.6% as male and 11.1% as other or transgender. In my experience, autistic women are more likely to frequent online forums related to autism than autistic men are.

Overall, 73.3% reported at least one autism spectrum diagnosis, with 60% reporting a diagnosis of Asperger Syndrome, 6.7% PDD NOS, 8.9% autism, 2.2% semantic pragmatic language disorder and 2.2% nonverbal learning disability.

In addition, 20% of the sample reported a diagnosis of ADHD, 6.7% sensory processing/integration disorder, 6.7% obsessive compulsive disorder, 4.4% dyspraxia and 2.2% other learning disabilities. In the 'other' textbox, 11.1% mentioned an additional diagnosis, with 6.7% each mentioning anxiety, depression and selective mutism.

On average, individuals reported having 1.51+/-1.392 diagnoses, ranging from 0-8. Seven individuals (15.6%) reported no diagnosis at all, 46.7% had one diagnosis, 24.4% had two diagnoses and 13.3% had more than two diagnoses.

The first questionnaire they filled out was the Autism Quotient (AQ). Their scores on the AQ ranged from 25 to 48, with a mean of 38.66 and a standard deviation of 5.851. The recommended cut-off for the AQ is 32, and 84.4% scored above that cutoff. This is actually higher than the AS/HFA reference sample in the original study of the AQ (p = .05), who had scores ranging from 18 to 48, a mean of 35.8 and 79.3% scoring above cutoff. Therefore, it's quite likely that our sample consists entirely of autistic individuals, even though 26.7% did not report an autism spectrum diagnosis. In a previous study of Wrongplanet members, I found that self-diagnosed and suspected autistics did not differ significantly from diagnosed autistics on the AQ. Similarly, in this sample, AQ scores did not differ by age, gender or diagnostic status.

The AQ has been divided into several subscales. On each subscale, my sample also scored significantly higher than the reference AS/HFA sample.

• AQ social skill mean 8.4+/-1.502, range 5-10
• AQ attention switching mean 9.05+/-1.154, range 6 to 10
• AQ attention to detail mean 6.95+/-2.342, range 3 to 10
• AQ communication mean 8.12+/-1.549, range 5 to 10
• AQ imagination mean 6.21+/-2.030, range 2 to 10

Like the total AQ, most of the subscales did not differ by age, gender or diagnostic status. However, AQ communication was significantly negatively correlated with age (r = -.381, p = .015), suggesting that social communication may improve throughout adulthood. However, a three-way ANOVA between 17-24 year olds, 25-35 year olds and 36-60 year olds was not significant, probably due to small sample size.

In addition, AQ attention switching differed by gender, with men scoring significantly higher (p = .048) and having a smaller range of scores (p = .042) than women. This suggests that a subset of autistic women have lower repetitive behaviour than other autistic individuals. However, it may also be a bias with the AQ, as many of the items in this subscale reflect interests that are stereotypically male.

The Dangers of Hand-Over-Hand

Hand-over-hand is nearly ubiquitous in the teaching of developmentally disabled children. But there are important reasons to be concerned about it. Indeed, hand-over-hand could even be harmful, for several reasons. (Note: In this discussion, I'm using 'teachers' in the general sense as 'people who teach', regardless of their job description.)

Tactile Defensiveness
Many autistic people, and some people with other developmental disabilities, have a characteristic known as tactile defensiveness. Tactile defensiveness is a sensory processing issue in which the person finds certain ordinary tactile sensations overloading or possibly even painful. People with tactile defensiveness have compared it to 'rubbing sandpaper on their skin', getting an 'electric shock', and similar descriptions.

For a person with tactile defensiveness, hand-over-hand could be quite distressing. And of course, when you are feeling overloaded or in pain, that's not a state conducive to learning. People with tactile defensiveness often report finding a tactile sensation easier to tolerate if they can predict and/or control the sensation, but this is usually not the case for a child receiving hand-over-hand. Teachers generally don't ask permission (especially with students who can't communicate verbally), and they may not even warn the child first.

It's important to note, also, that not everyone with tactile defensiveness will pull away. Sensory overload can sometimes trigger a 'freezing' response, which can be difficult to overcome. (I've experienced this in response to loud noises, such as a fire alarm.) In addition, some people may have been trained out of resisting by prior experience with teachers who didn't let them pull away.

Abuse Triggers
Unfortunately, children with developmental disabilities are at an elevated risk of abuse. One study found that, in a sample of DD children with an average age of 9 years, 61% had experienced abuse or neglect at the hands of a caregiver. That's two thirds of children! When I hear these high numbers, I want to dismiss them, I want to ignore them, but the data is clear. Study after study have found similar high rates of risk.

Individuals with a history of abuse often see touch as potentially dangerous. Physically abused individuals may be observed flinching, expecting a blow, when others make sudden movements. Sexually abused individuals often feel a strong need for control over how and by who they are touched. Both groups may find that touch - especially unexpected touch and touch without permission - triggers feelings associated with the abuse. In severe cases, they may even experience sensory re-experiencing, literally hallucinating sensations linked to the abuse.

You may not know if an individual you are working with has been abused. Judging from the statistics, at least 2 out of 3 of them probably are. Even individuals with good communication skills may not be able to talk about abuse - if the person also struggles with communication, it may be completely impossible for them to report any abuse.

Abuse Prevention
It's also important to remember the possibility of future abuse. Even if a particular individual has not been abused yet, they still remain at risk. Sexual abuse, in particular, is often perpetrated by non-caregivers, or by caregivers that the child has only recently met. And while it is never the child's fault that they were abused, research has suggested that there are things children can do to resist sexual abuse - a child who strongly protests and resists is less likely to be victimized.

Among non-disabled children, one major factor in abuse risk is how well the child can refuse an unwanted touch from an adult. This is a common features in abuse prevention programs, which have been found to reduce actual abuse risk. Children who can firmly refuse an adult's touch will sometimes discourage an abuser from taking the abuse further, and are more likely to report the abuse. Obviously, the benefits on reporting abuse might not apply to a minimally verbal child. But a child who resists could discourage an abuser, or elicit attention from others which discourages the abuser.

What impact would hand-over-hand have on a child's ability to resist an abuser? Unless you have asked the child permission and gotten verbal or nonverbal consent, by using hand-over-hand, you are communicating that you can touch them whether or not they want it. And if the child resists and you don't let go, you are teaching them that resisting your touch is futile. And what happens if they apply those lessons to an encounter with an abuser?

Alternatives
So, if hand-over-hand has so many problems, what else can you do?

First, you can use non-touch ways of teaching. The PECS program leaps to hand-over-hand without any attempts at any other form of prompting or modeling. However, modeling use of an AAC system by using it yourself has been found to be an effective teaching method for many children. Similarly, video or picture modeling of sequential activities is a proven learning technique for autistic children.

Shaping is another non-touch way of teaching. This is how a typical baby's 'mamamam' morphs into 'mama' - mother reacts to anything that sounds like 'mama', teaching the child that his or her babbling has meaning. All sorts of behavior can be shaped in a similar fashion. As the behavior becomes established, move the goalposts to a closer approximation of the desired behavior.

If you must use touch, take some lessons from the recommendations for visually impaired individuals. The VI field has done a lot of thinking about how to create predictable and respectful touch. Warning about touch before touching them is a big thing. Even if you're not sure they understand, warn anyway.

Better yet, ask permission. Even nonverbal individuals may be able to communicate whether or not they are willing to be touched. For example, if you ask a child 'Can I help you do X?' and reach towards their hand, they might pull away and make a protesting sound or they might soften their hand and offer it to you. Those behaviors are nonverbal signals of whether the child is willing to be touched. And certainly if the child refuses, don't pressure them. (With other forms of touch, such as changing their diaper or stopping them from doing something dangerous, you may have to ignore a child's refusal. But providing a lesson on how to perform a motor activity is not worth overriding a child's refusal.)

VI therapists also recommend a practice called hand-under-hand. This practice is basically the opposite of hand-over-hand - instead of placing your hands on the child's hands, you place your hands under the child's hands, so they can feel what you are doing but are free to pull away if they wish. Again, it's still important to give warning and try to get consent, but even if you overstep things, it's easier for the child to stop the touch at any time they choose. Hand-under-hand is not just for VI children - any child who doesn't learn well through visual demonstration can benefit.

In general, be careful when you touch a vulnerable individual. Touch can be hurtful if it's not used carefully.