Into the Swing of Things

On a sunny, fall day, I picked up my Ipod and started to walk down to the local playground. Swinging and listening to music always relaxed me, despite the fact I would often get stares from other people in the park due to my age. Being watched always made me slightly anxious, but not enough to want to stop swinging.

On this particular day, I walked down the street to the park, hoping it would be quiet so I'd get a free swing. I also hoped that nobody would bother me. However, my body craved the full body motion of the swing sailing through the air. I think one of the reasons I didn't feel much anxiety about breaking social norms, is I was never one to conform to a group. Even in high school, if my group members had the wrong answer on a project, I would protest loudly and refuse to give in to them, despite ending up being ostracized. As I almost never conformed to group norms, I didn't establish idiosyncrasy credits, I almost always acted outside the norm. It was always my personal belief that somebody should be free to do whatever they enjoy as long as it does not harm others in any way. Conformity was a bad word.

When I got to the park, I sat down on the swing, turned on my music, and closed my eyes. I was in my own world, pretending that the others in the park weren't there. Suddenly, three young girls about junior high aged stood in front of me. I pulled my headphones out of my ears. "Do you want to play tag with us?" asked one of the girls.

I assumed they must have known the children I babysat and I had a reputation for being a fun babysitter so I tucked my Ipod in my pocket and followed them over to the playground equipment. I was thinking that I was being kind by agreeing to play with these children. When the game began, I struggled to climb the structures of the equipment as I have some difficulties with coordination. Eventually, one of the girls stood in front of me and said, "Tag me. I'll be 'it' now." I was beginning to feel suspicious that these girls were "being nice" to me rather than the other way around. My anxiety level was beginning to rise, but I continued to play. For once, I thought I was conforming to a social norm, one that said if somebody asks you to do a simple request, you'll oblige.

After we ran around for a few more minutes, one of the girls stopped, stared at me and asked, "May I ask you a question. Are you mental?"

My heart started to beat fast. I knew I had Asperger's Syndrome and struggled socially, but I was always proud of my intelligence and my good grades in university. I toyed around in my head with how I'd explain to this children how I had strengths in certain areas but struggled in others. I felt I owed them some form of an answer, even though I did not have to say anything.

After a few minutes, I finally came up with an explanation. They asked me a few questions and then we ended up talking about something different. When the conversation was finished, I started to walk home.

As I was walking home, I wished people would leave me alone and not judge me. Swinging was a behaviour more typical of children so I wondered if people may think that because I was swinging, I automatically had the mentality of a child. This angered me. I was also annoyed at the use of the term "mental" because I have some friends who have intellectual disabilities and I don't believe this should make them any less of a person having social difficulties would. I also wondered why I don't judge these friends for their differences, yet I felt the need to be defensive of my own intelligence.

After studying social psychology, I concluded that although I don't always go along with group norms, I still feel the need to make myself look good in front of a group and am upset when people judge me or treat me differently. The behaviour and attitudes of others won't necessarily make me conform, but it still has an effect on me.

Unlike in the Experiment

People seeking psychological interventions are a diverse population. They often have individual differences that make these people less homogenous as a group than those in controlled clinical trials of treatments. When treating these patients, sometimes it is necessary to take these differences into account by deviating from treatment methods used in trials.

There has been a great deal of research on augmentative communication and non-verbal people with autism. Cards with line drawings and text are the most commonly used method. When I was living in Nova Scotia, there was a boy in the high school's special education class who had autism and was also blind. Therefore, any cards with pictures would not be suitable for him. The staff put buttons with several different textures onto a talking communication board so the boy could feel the differences between the buttons.

Over time, as therapists discover individual differences in the patients they work with, they can document their course of treatment and publish it as a case study. As more case studies become published, clinicians will be able to research treatment in cases similar to unique cases they may be presented with.

A recent case study documented the management of a transgendered man with autism. It was the first such case to be published. In a case such as this one, psychological management had to take into account the man's social difficulties related to autism as well as those related to his gender. Treating this man the same as the transgendered individuals in large scale randomized studies would not be appropriate, because none of these individuals had autism.

If a large amount of similar case studies are published, a meta analysis can be performed to give some indication of effectiveness of particular treatments in unique situations. For example, if several case histories were published on communication and blind children with autism, therapists could infer treatment techniques from these studies. However, this is not as structured as randomized controlled studies so no definite cause and effect inferences can be drawn. However, cases like these are uncommon enough that it would be unlikely to get a large enough sample size to participate in a randomized controlled trial.

Another advantage of documenting unusual cases and their diverse treatment plans is allowing clinicians to determine if their case is entirely unique, or if there are other similar cases in the literature. For instance, IQ is predicted to be relatively stable across individuals' lifetimes but cases exist where one can undergo major changes. In my own case, I was able to use strong verbal skills to compensate and bring my performance IQ up from the borderline range into the average range. When reading a recent study on young adults with Asperger's syndrome and outcomes, I've realized that this is uncommon, but not unheard of. In fact 15-20% of individuals with high functioning autism or Asperger's syndrome eventually compensate for their difficulties enough to be fully independent. One man in the study became a married university professor.

Besides learning from large scale studies, clinicians and researchers can gain a great deal of knowledge from case studies and their own atypical patients. Psychology is not a "cookbook" in which a psychologist follows a recipe to treat a patient. They must be able to tailor treatment to the unique needs of their patients.

More than Medication

When a new pharmacological treatment becomes available for a psychological disorder, it is usually widely publicized by its manufacturer. Unfortunately, the same cannot be said for non-medicinal psychological treatments. There is also more government funding available to assist patients in receiving medicinal treatments than there is for patients receiving non-medicinal therapies.

Risperdone is a commonly used drug to control aggressive behaviour in individuals with Autism Spectrum Disorders (ASDs). It has shown success in reducing the frequency of tantrums. Patients with ASDs typically stay on risperdone permanently as studies suggest that behaviour returns to baseline within several months of being taken off the medication.

Applied Behaviour Analysis is a validated therapy for helping children with autism develop appropriate communication and behaviours. It involves analysing aspects of the child's behaviour and environment and using the principles of conditioning with the goal of changing behaviour. Although it is not a cure for autism, this therapy has shown statistically significant improvement among patients, often resulting in improved quality of life for children affected by autism. Unfortunately, very few provinces or health insurance plans provide funding for children with autism to receive this therapy. However, many health plans cover risperdone.

In my volunteer work with children with ASDs, many of these children were on medication either for anxiety or aggression. However, medication did nothing to help these children develop adaptive skills. This was done through specialized therapies conducted by professionals from a variety of disciplines, including psychologists. Medication cannot teach a child how to have a conversation or make eye contact. Nor can it teach a child appropriate outlets for the urge to engage in self-stimulatory behaviour.

Besides volunteering with children with ASD, I am also an individual with Asperger's syndrome. Medication has played some role in helping me develop self-control. However, medication alone is only a small part of the therapeutic process. In order for me to become successful in controlling the emotional outbursts associated with Asperger's syndrome, I had to be trained in relaxation techniques such as meditation, recognizing and rating my level of frustration, and methods of removing myself from a situation before I was unable to control myself. None of this would have been accomplished if I had been treated by a general practitioner who did nothing more than scribble a prescription on a piece of paper.

In many cases, psychological treatments are just as, or more important, than medication in the treatment of disorders. However, it is only recently that psychology is being recognized as a medical profession. It may be more difficult to promote awareness of psychological treatments than it is for drug treatments due to the mass marketing of drug companies. However, public education, along with demands for government funding of psychological treatments, will help ensure that patients get the most successful therapies, rather than the most marketed ones.

Safe Havens in The Storm

I do not like crowds and become easily overloaded/overwhelmed in busy public places. One place I especially hate is a certain grocery store in our neighbourhood that always has masses of people and a large echo. I sometimes get so overwhelmed in that store that I briefly lose my words.

I often decline invitations from friends to go to busy public places (except for World Water park because I love water so much that I put up with the sensory overload). I'm glad the University I attend (which has only recently achieved University status) is a relatively low-key place. The classes only have about 30 people and the halls are relatively quiet. There's also lots of small, quiet spaces to go work in like the place I'm sitting in the picture at the top of this post.

I also prefer to meet with friends and family members one or two at a time rather than in large groups. At large family gatherings, I socialize for about an hour and then have to go off on my own.

In my school and work, I will always have to deal with overload so it is important for me to have some quiet places to go when I need to be alone.

How do you other aspie/spectrum readers deal with overload in public places?

The Right Family

The recently publicized case of Elton John and his husband trying to adopt an infant with HIV has raised some serious questions about adoption and children with disabilities. In my opinion, all too often, children spend their lives in orphanages or foster care because the laws that dictate what constitutes a "good" family for a child rule out people that could be a good match for a child but do not meet requirements due to being a non-conventional family or the wrong race.

For instance, in Alberta, many First Nations children wait in foster care for families because non-native families aren't allowed to adopt them. Yes, parents of the same race and culture of a child would be ideal, as would be a two-parent family with a mother and father. However, these options aren't always available, especially for children with significant disabilities.

I believe the most important element of a family is unconditional love. Wouldn't it be better for a child to have a family who is a different color than them or non-conventional than for them to never have a family to call their own?

What are your opinions on this?

What's in a name?

There has been recent discussion about eliminating the diagnostic term Asperger's Syndrome in the newest edition of the DSM and merging it under the umbrella term of Autism Spectrum Disorders.

A lot of individuals with AS identify as "aspies" and like to see themselves as seperate from those who are "autistic." However, most research shows that rather than there being a clear distinction from "Asperger's" and "autism," it is more of a spectrum disorder.

The only distinction that I have sometimes seen made in literature between Asperger's Syndrome and high-functioning individuals with autism is that some experts say the difference is individuals with Asperger's have higher verbal IQs than performance IQs and that the opposite is true in High Functioning Autism. However the impairments with non-verbal communication, sensory issues and other symptoms do not differ significantly between these two conditions. I also wonder if Non-Verbal Learning disability will be included in the new edition of the DSM in any way.

I do not have a problem with this new categorization. I have worked with many individuals with autism and find I am able to interpret their body language (a more extreme version of my own) better than I can interpret the body language of the general population. I communicate and relate very well with individuals with autism, even those who are non-verbal and have profound cognitive disabilities. In a way, it is like being bilingual, being able to speak english, and "autism."

Society unfortunately has a stigma attached to the word autism, picturing only the most extreme cases. I think education is the key to reducing this stigma, not using labels to cover up the word "autism." I also hope that this new labelling system will allow more, not less individuals to qualify for services.

IQ Tests and Exceptions to The Rule

For most individuals, intelligence Quotient (IQ) tests have relatively high predictive validity. Scores are also likely to remain consistent across the lifetime of individuals. However, as with medical tests, there are always patients that display exceptions to this general rule.

At age 6, I displayed a 40 point discrepancy between my verbal and performance IQ on the WISC (Wechsler Intelligence Scale for Children). with my verbal IQ in the high average range and my performance IQ in the borderline range. When retested at age 12, my performance IQ was in the average range and my verbal IQ was in the superior range. Sometimes, children with learning disabilities are able to use their areas of strength to compensate for their weaknesses. For instance, I learned to verbalize my way through visual-spatial tasks. The psychologist administering the test noted that I spoke aloud to myself as I solved the non-verbal portions of the test.

The high predictive validity of IQ tests still stands for the general population. However, predicting an individual's future (especially when making decisions that will have a major impact such as choosing to place a child in a special education class) should be done with extreme caution. In addition to cases with children with learning disabilities, there is also some controversy about IQ testing with children who are recent immigrants or who have low socioeconomic status. For instance, a child may do poorly on the verbal section of a test due to lack of general knowledge about Canadian culture or a language barrier rather than a learning difficulty.

Except in the case where cognitive disability is fairly certain, limiting a child's educational opportunities by placing them in an educational program that will not give them full access to academics may put an artificial cap on the potential of the child. In some cases, a child will simply need accommodations such as extra time to complete tasks and additional instruction in order to perform at grade level. In other instances, modifications to the child's home environment can make a difference. Modifications to the core outcomes of the academic curriculum should be a last resort.

The best use of an IQ test with children with disabilities or other barriers to learning such as poverty is to determine their current strengths and weaknesses so professionals can best determine ways to help children overcome or compensate for these difficulties. As a child, my parents and therapists spent time coaching me in how to use self-talk to convert visual information into words. That and my already strong verbal skills allowed progress much farther than predicted in visual-spatial abilities. I was even able to interpret curves in first year University calculus with the help of a tutor. However, as predicted by that initial test at age six, residual difficulties still remain. For instance, I have problems with direction and orientation in space, thus taking many trials before I learn a route. The intent of this post is not to discount the predictive validity of IQ tests, but rather to state that humans are a diverse population and that not every individual in this population will perform as predicted. Therefore efforts should be made to aim for the best possible outcome rather than the predicted outcome.

Asperger's + Illness = ?

When I get sick, I usually don't run a fever and I have a relatively high pain tolerance. The first signs that I'm coming down with something are usually dizziness and exaggerated sensory processing difficulties (often severe enough that I cannot tolerate crowds and public places), and agitation. I also often get chills and extreme exhaustion. In severe cases, I am not able to focus on any activity.

I know from some of the literature I've read that illness detection and diagnosis is often more difficult for individuals on the autism spectrum. Parents should watch their children for changes such as more tantrums or self-stimulatory behaviour. Adults on the spectrum should monitor themselves for signs such as being more tired or agitated than usual (this can be difficult to determine because those with ASD are often tired from the daily social interaction of school or work).

If you or a family member with ASD is feeling "off" for more than a few days without an obvious environmental cause, visit your family doctor and get some lab work. Don't always assume it's something emotional.

I was having extreme exhaustion and dizziness last week to the point I was unable to study for my exams. It wasn't until early this week that tests from my doctor revealed the cause. I've missed most of this week of school.

Do you or your family members with ASD display atypical symptoms when ill?