What I think I know about autism.

It’s autism awareness month. I want to be more aware.

So I decided to start by listing everything I think I know. That way, when I learn more, I can see what I have learned.  Please note that these are what I think I know, rather than anything I have evidence for. Yet.

1. It’s a neurological thing

2. It’s environmental somehow.

3. Can’t directly diagnose, have to work from symptoms.

4. Can’t cure, have to accommodate.

5. More cases are showing up. But I don’t know if it’s because more are being diagnosed or more are happening.

6. Therapy is a conditioning thing

7. It’s somehow related to Dustin Hoffman in “Rainman”

8. Not an IQ issue.

9. Not genetic.

10. Often invisible to people looking.

11. Often involves repeated motions.

12. Doesn’t usually result in institutionalization.

13. Can’t just snap out of it, but can seem to snap into it.

14. Lack of awareness by other people adds to the frustration parents already feel.

15. There are a bunch of related conditions.

16. I don’t know what to call autism.

17. I have friends for whom autism isn’t an abstract concept.

So, if you don’t have personal contact with autism, what do you think you know about autism? Don’t look it up. Just leave a comment.

And, you may want to get this window into what autism looks like.

10 responses to “What I think I know about autism.

  1. For years medicine has tried to define symptom patterns into specific disease…it makes it easy to code for insurance, it makes it easy to make pharmaceutical recommendations, and it makes it easy to research. In my opinion it does limit our clinical understanding. From my reading, Autism is a behavioral manifestation of a child hypersensitized to his or her environment. This seems to be following some dynamic influence of physical, emotional, and biochemical triggers at vulnerable stages of development. Most Autistic children have a GI disorder known as “Leaky Gut”. Like the chicken or the egg, it’s not sure whether it is a cause or an effect, but leaky gut itself can manifest in many behavioral presentations and food sensitivities. The gut has more nerve endings than the spinal cord and is actually a large immune organ just as it is digestive tissue. Healing the gut, addressing food sensitivities, and undergoing neuromuscular reeducation are components that can help reduce behaviors and help young kids succeed in mainstream environments.

  2. Scott Looney

    There is plenty of evidence that autism does have a genetic cause.

    @Alexander. Some autistic children have “leaky Gut” but not most. Changing their diet will not help nearly as much as you would like to think it does, and you are doing people a disservice to suggest that it will. I realize that you have a lot invested in your theories of diet and the “evils” of the pharmaceutical companies. But as the parent of an autistic child, I believe that you are selling snake oil.
    I am not a “tool of the establishment” or being paid by “Big Pharma” I just read a lot.

  3. Alexander and Scott.

    This is part of why I’m wanting to find out more. I’ve discovered that there are lots of suggestions of answers about what autism is, about cause, about treatment, about outcomes. What I’m also discovering is that there is a lot of ALL kind of thinking that then leads to frustration and fear and other struggles.

    There is, for example, an article I’ll link to in a few days that talks about the genetic link. What impressed me in the article is that the particular gene isn’t a cause but is a susceptibility, that there are tremendous environmental and physiological variations, and that it offers the potential of treatment in limited cases.

    As we move through this month, I’ll be very interested in “here’s what we know for us” and “here’s what hasn’t worked” and “I never knew that” and “wow, that must be really challenging.” In the process, I’ll invite civility and restraint from universal statements.

    Because until there is an absolute test and cure for 100% of people, we are talking about real people with real feelings and dreams and despairs who are trying to figure out how to live with everything shaded with a family of hues called the autism spectrum. And that, as Scott points out, is hard.

  4. I am not sure the comments is necessary a place to help people understand autism better, but let me try.
    One theory about autism is that the “neurological pruning” that happens in developing brains does not occur the same way in autistic children, meaning they have many more almost hyperactive neural connections, making them hypersensitive to noises, tastes, sounds and the like in their environment.
    There are very good articles in the New England Journal of Medicine showing some cases of autism may be caused by microdeletions of DNA, making it a genetic disorder. Like many neurological issues, including ADHD and dyslexia, it seems to occur on a spectrum of severity.
    We’ve confused the issue by adding diagnoses such as “Pervasive Developmental Delay” ” aka PDD, PDD NOS, Asperger’s Syndrome, nonverbal learning disabilities, Sensory Integration Disorder and the like to the mix, where many of the kids carrying these diagnoses are probably more appropriately placed on the autism spectrum.
    They’ve also found many kids previously lumped in the “mentally retarded” basket are now being diagnosed with autism- again, it all depends on where on the spectrum the child is, how severely they are affected, and whether or not they can accurately measure a nonverbal child’s IQ.

    It’s complicated. And like development in general, you never know what the future holds in a developing brain, so early diagnosis and intervention is key, especially to trying to ensure the best outcome possible.

    I hope that helps, and happy to point you to reliable resources if you want.

  5. exactly Whitney. I was looking for more the my-kind-of-disclosing here in the comments: “Here’s what I think I know” more than the research. That said, I wasn’t clear. And I’ll pull these comments up into the posts during this month.

    The neurological pruning so resonates for me from what I knew in the past (see above). It makes sense as a theory or as a description of what is happening. I’m looking forward to reading more.

    thanks for the threads.

  6. Johanna Fenton

    I heard the movie “Temple Grandin” is very good. It’s not a scientific approach either, but I hope by watching it, it will make me more compassionate for the autistic people in my life.

    I read about Temple Grandin sometime ago to do just that–understand autism (higher functioning, in particular), and it helped me quite a bit. Hearing someone’s story helps me better than reading the facts out there.

  7. Bill Pasnau

    People with autism are sometimes genius level smart in certain areas.

    They are trapped in their own minds, able to think clearly but incapable of expressing those thoughts.

  8. Bill Pasnau

    …I think?

  9. thank you thank you thank you. This IS a great insight.