A blind spot for autism

Prevalence rates for autism have risen so dramatically that it can now be regarded as a rather common disorder.  Most people now espouse opinions about autism after having being exposed to  articles in the press or having seen movies and/or TV series.  This recognition of autism has brought forth progress in our understanding of the condition, including some of its precipitating biological and environmental factors. Still, there is one aspect of the condition where not enough progress has been made: the home environment.

Doctors and other health care providers perform evaluations and generate possible solutions to medical problems.  However, their engagement with the patient is limited and possible solutions unfold during an ongoing evaluation that may take many years.  Once a patient leaves the doctor’s office he or she is back to the real world.  This is the crux of the problem.  You may be lucky enough to have a well oiled multidisciplinary team of medical professionals but results from such an intervention is entirely the making of patients and parents.

I will receive criticism by saying that there is little practical information available to parents which may help them with real life problems related to autism.  There are autobiographical books that, inspiring as they may be, offer a slanted look at the condition.  Many of the opinions raised in such books are unrealistic and may be limited to the unique environment where the author’s grew up.  There are also books targeting parents which are written as self-help guides.  Indeed, I have authored some of them.  Unfortunately many of these books fail to realize that each autistic patient is unique.  There is no single roadmap that must be followed in order to help a person with autism.  Most of the time we handle problems as they present themselves.  It seems that our medical system and home related interventions are geared towards playing catch up with autism.

I am a firm believer in empowering people through knowledge.  I have written about the brain in autism in many previous blogs.  I have attempted to stay away from scary statistics when writing these blogs as the figures are open to varying interpretations. Opinions are difficult to sustain given an environment wherein turf wars are the norm rather than the exception.  We all agree that there is no cure for autism, but many patients are really not looking for one.   Contrary to many other medical conditions, autism does not have periods of recovery and relapses. In medical disorders, bringing down the levels of glucose in blood or complete abstinence from alcohol are appropriate ends to therapeutic interventions. Outcome measures are more difficult to define in autism.  The end point is symptomatic treatment, it is never about taking the diagnosis away.

Is it then more proper to consider autism a social rather than a medical condition? Indeed, behavioral criteria (DSM5) offer only a crude assessment for when a person crosses diagnostic boundaries.  Where does neurotypical begins and  high functioning autism ends? There is a myth that needs to be dispelled: that you diagnose autism based on a certain amount of social apathy or isolation.  Autism is not about having one symptom, severe as it may be.  We now describe as autistic people with problematic or maladaptive behaviors and give their voice more credence than that of medical professionals.

My oldest grandchild has a syndromic form of autism.  He spends most of his time in bed or in a wheel chair.  His body has been ravaged by seizures.   He can not rationally decide on treatment as he is severely intellectually impaired. He can not freely choose to stop his behaviors as they are compulsions not open to choice. Many times his actions do not have an aim, are not expected to provide pleasure, and sometimes exposes him to harm.  My grandson can not camouflage his behavior, he wears autism on his sleeve.

I have a blind spot in regards to autism that has been provided by my personal experience with my grandson and with many patients.  I have not consciously decided to take a stance pro or against Neurodiversity.  However, I do experience frequent wake-up calls from patients that need medical attention.  This realization keeps me alert and able to recognize problems sooner rather than later.  Accommodations are a nice aim for many, but medical interventions, as for my grandson, are life saving.

I have been fortunate to have had my grandson in my life.  The feature image of the blog shows him receiving a kiss from his younger sister. Love you Little Bear. Hugs and kisses from Big Bear.

Reference

Casanova MF. Autism Updated: Symptoms, Treatments and Controversies. Amazon Publishing, 2019.

7 responses to “A blind spot for autism

  1. You mention autism not having recovery and relapses,I would take issue with that.Of course that brings into question just what is autism,and how we define it.Regressive autism is a very different animal.It can be caused by either inborn metabolic,or,as in my case,immune disease.You can go through prolonged periods of improvement,then contract an acute infection,and then regress.Multiple regressions over time is not unusual.From infancy,to my late forties,I suffered four major regressions,from acute infection,like meningitis,and pneumonia.

    I once saw somewhere,that as many as a third of autistics may have a primary immune deficiency.I am working my way to a diagnosis of a PID,after chalking up diagnoses of multiple autoimmune diseases,including,of course cerebral folate deficiency.My case may be unique,as I have a very rare DNA repair disease.One that has one
    documented case in the world,with developmental delays,and intellectual disability,but no documented case with ASD and developmental delays.But you don’t have get quite that esoteric.You have many other more common conditions,such as mast cell diseases,etc,that have autism as a feature.

    While I am glad to see diseases like PANDAS and PANS being teased out of autism,we have yet to have a real discussion as to how many comorbidities should we pile onto a condition,to have it stop being autism,and become something different entirely.

    Liked by 1 person

    • As always you are right. I meant to say that autism does not normally follows the undulating course of other medical conditions. Recovery may happen in some cases, but they are the minority. I have written blogs in this regard- as well as for regressive autism. Subgrouping autism may be necessary for precision medicine. How many subgroups? According to related comorbidities there are so many that trying to cover them all under the same umbrella term may be counterproductive. If you ever want to expand on the subject, please consider writing a blog for corticalchauvinism. You are always invited.

      Liked by 1 person

  2. Always enjoy your observations, as a team leader looking after a adult PDA client in the heart of the community with a in -experienced team, I find so frustrating dealing with ambiguous diagnosis and complete absence of any useful information or training on handling my clients needs on a day to day basis, without being performance judged on inappropriate templates!. There are times when I feel this is a no win scenario!.

    Liked by 2 people

  3. One of the issues I have with Autism is that practically everything these days is called Autism. We went to several schools before settling on the one that our son goes to, but most of the schools we saw, the kids are just socially awkward, whereas my son is 16 and non verbal. There really needs to be ‘categories’ of Autism, where they’re not taking every case and throwing it in a single bucket. Kids like mine need MUCH more funding, much more resources than kids who can pretty much take care of themselves, but just need help on social etiquette.

    Liked by 2 people

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