Tag Archives: Applied Behavior Analysis

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan

Six Myths About Autism

I haven’t written about autism in a long while. It is mostly because I have been busy writing other things, such as posts chronicling my eating disorder recovery journey and posts inspired by writing promts. I also don’t want to write too involved posts that are unreadable to a large majority of my readers. However, just today, I came across a really interesting post dismantling five myths about cerebral palsy. I am not a total laywoman on the subject of cerebral palsy, but even I could learn from thhis post. So I thought maybe I could do the same on autism. Here are some common myths, some of which even autistic people or parents of autistic children buy into. I did get rather caught up in details I think, but if some of my readers learn something from this, I’m content.

1. There is one single, known cause of autism. Most autistic people claim that autism is 100% genetic. Some people, mostly parents of autistic children, claim that autism is caused by vaccines, pesticides, or other environmental factors. These claims are often politically motivated. The autistics want a genetic cause because it means they are truly wired this way, while the people who claim vaccines or other environmental facotrs cause autism, want to argue that autism is a disease that can and should be cured. The reality is, the cause of autism is unknown. While the vaccine theory has been disproven, other environmental factor theories have not and twin studies show that autism isn’t 100% genetic. Other factors, such as premature birth and pregnancy complications, have been named too. Even if autism were 100% genetic, there are likely more than a few genes that contribute.

2. Autism is a physical illness. Related to the vaccine theory mentioned above, some people believe that autism is caused by “leaky gut”, an inability of the bowel to digest certain proteins that will leak through the bowel wall into the bloodstream and also through the blood-brain barrier. Until very recently, I thought that “leaky gut” is a fake condition propagated by alternative medicine. It isn’t. In fact, there are several conditions speculated to be due to this problem, for which the genes have been located on chromosome 16. The most logical example is Celiac disease, but other bowel conditions (eg. Crohn’s Disease) and in fact neurological conditions (eg. multiple sclerosis) may be partly caused by this problem. Therefore, it is not entirely impossible that autism in some cases may be partly due to “leaky gut”, but this is still just a theory. Research in this area (eg. whether gastointestinal problems are more common in autistics) shows mixed results. If a child or adult with autism has gastrointestinal symptoms, they may feel better after treatment for these symptoms. That doesn’t mean that autism is physical in nature. It could be related to “leaky gut”, but that doesnt’make the condition itself a physical health problem. By the way, there are no treatments so far that solve “leaky gut”. Avoiding gluten and dairy may help, but its effects have not been proven in those who do not have diagnosable Celiac disease.

3. Autism is a mental illness. This is somewhat of a political statement, and so is the stateement that it definitely is not a mental illness. I don’t particularly care if someone says autism is a mental illness, but most people disagree. There is no strict definition of a mental illness (contrasting it with a developmental disability) in the psychiatric manual (DSM-5). There is a definition of a mental disorder in DSM-5, but this includes autism too. There is also a definition of a neurodevelopmental disorder, the category under which autism is classified. This category includes conditions like ADHD, intellectual disability, Tourette Syndrome, and autism of course. This is a similar category to the categories of schizophrenia and other psychotic disorders, obsessive-compulsive spectrum disorders, or any other category within DSM-5. Formal categorization aside, however, most people say that autism is not a mental illness because it is developmental in nature. It is a common myth however, often held by autistics who have had negative experiences in psychiatry, that absolutely no treatment originally designed for other mental disorders, can be used for neurodevelopmental disorders such as autism.

4. All autistic people have an intellectual disability. Autistics span the full range of intellectual abilities. The most pessimistic (if an intellectual disability is seen as a negative outcome) studies show that around 40% of people with autism spectrum disorders have an intellectual disablity. However, IQ is hard to measure in people with severe social and communicative deficits, so those with more severe autism are likely to score lower on a standardized IQ test (such as the Wechsler scales) than their actual ability. Others, particularly those with good verbal skills, may score higher than their real-world functioning would suggest.

5. Autism affects children only. The fact that it is developmental in nature, doesn’t mean that autism doesn’t affect adults. Autistic children gorw into autistic adutls just like for example children with Down Syndrome grow into adults with Down Syndrome. Children and adults with autism may improve in daily functioning, but they won’t become non-autistic.

6. Autism can be cured. Autistics, like people with other developmental disabilities, can learn adaptive skills to function as well as possible in daily life. That again doesn’t make them non-autistic. The most evidence-based intervetnion is applied behavior analysis, an intensive behavioral training. Even this approach can merely teach autistics to act like a non-autistic person in the situations they’ve been trained in. Some people cliam they have “cured” their autistic children with biomedical interventions. I won’t call these people liars, but there is no scientific evidence to support their claims.

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