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Saturday, April 2, 2011

Autism Awareness Day and The Enemy

Last year I wrote how raising awareness and understanding about the autism spectrum became my passion. With each presentation and blog post my passion continues to get bigger. There was an event last month though that made the need real to me. I have talked in the past about stories of doctors or other professionals who don’t know anything about the spectrum nor were they willing to learn but had never met one of these types until last month and I realized what the enemy is.


Who or what is the enemy? I met this entity while doing a lunch and learn with Matt. I look forward to each and every one of these because I feel it is such important work. So far in these lunches doctors are truly interested in TouchPoint and learning about my experiences on the autism spectrum. The feeling of accomplishment I feel from these can’t be put into words, but I will put into words what it is like to meet the enemy as one this day last month I finally met one of those doctors I have written about.

Who is “one of those doctors”? Many times since the beginning of my blog I have written about the horror stories I have heard be it a doctor telling a family to wait a couple years and reassessing then to see if it is autism, or the doctor who threw a ball at the child and if the child could catch it then, well, it couldn’t possibly be autism.

We waited in this doctor’s office for quite some time and finally the doctor came in. The conversation was brisk as the doctor obviously wanted to be elsewhere. He was holding a new sleeve of Strata golf balls and a new tool, perhaps the tool that one uses to repair green damage, but while Matt was talking the doctor was reading the fine print on the package of golf balls. When pressed on if he knew what the MCHAT is the doctor looked at Matt and said, plainly I might add, “no.”

Once Matt showed him an example of one and the questions that are on it the doctor once again slipped back into golf mode. I found this odd as the temperature was 38 degrees and the skies were about as gloomy as they could be; I guess this was fitting for the mood in this doctor’s office.

Matt then asked, “If you suspect autism what do you do?” and the doctor stated that he refers them to place X (I am not in the business of naming places or names in events like this as it is not productive. Even if you find me and press me for names I will not give it as I don’t think it would be proper) and Matt responded respectfully, “That place doesn’t do autism”. Matt immediately followed up with, “After that what would you do?”

The following answers will live with me forever. The doctor who showed no emotion except fondness for his new golf balls said, “Well then I will refer them to a developmental pediatrician.” That sounds great, right? Matt then asked the distracted doctor, “Who?” and the doctor’s response? He stated, “I tell them to look at a phonebook for a name.”

The phonebook!? It was clear to me now that this doctor would not recognize autism if it were right in front of him. The signs would be lost and furthermore he, if he could figure it out, would not know what to do if he did.

This enemy is a dangerous thing. I never realized it existed and what I mean by that is that it is sort of thing that I have heard, but people truly can’t be that ignorant, right? Yet here I was in this doctor’s office witnessing it firsthand.

Ignorance of the autism spectrum by a person, say, a stranger on the street isn’t all that dangerous of a thing. What is dangerous is the fact that there are doctors, people who have made it a career to make people better and to point people in the right direction when they don’t know what to do, that don’t know a thing about autism. The latest statistics, and I know I am probably preaching to the choir here, is that about 1 in 100 births are going to be on the autism spectrum. That is more prevalent than pediatric cancer, diabetes, and AIDS combined! With that being so, and I have said it so many times, there is NO EXCUSE for doctors to be blind the growing number. In 1997 the numbers were about 1 in 500 so the rate of growth is staggering. But this raises the question, how high will the numbers get? We are about 1% of the population, but maybe in 10 years it will be at 1.5% or maybe 2%. Will doctors still be blind then? With so much hope out there, so long as families are made aware of it, can society afford to continue to have doctors oblivious to the growing numbers of autism?

I said with each day my passion grows and I have relived that experience in that office each day since. Most of the time doctors are highly receptive to information about autism, but on that day the enemy was made real. I saw it, I felt it, and it saddened me. Today is World Autism Awareness Day and I hope someday we can conquer this enemy. This enemy isn’t that doctor though but a plague that is out there. There isn’t one person that is the enemy as the enemy is ignorance. This month and this day may be the one time of year that autism awareness is in the forefront, but for me each day is a battle against this enemy as there is hope, but so long as professionals don’t fall prey to the enemy.

7 comments:

  1. I had a similar experience a couple of years ago, when I was suspended from work due to a confrontation with a co-worker who didn't believe I had autism and had been causing me problems as a result.

    I was sent for an assessment, and was sent to a psychologist on Harley Street. (Harley Street is where the UK's top private doctors have their practices - it's synonymous with "medical elite".) The guy admitted to my face that he had no experience of dealing with Aspergers at all, or indeed anything related to the autistic spectrum: his primary clinical experience was severe psychosis. Also, his starting point was the assumption that I did not have AS. This was presumably because I am high functioning (i.e. I present as entirely normal 99% of the time) which was also the reason my co-worker didn't believe me. He was also quite intimidating, and I found it impossible to be open with him about my experiences.

    The outcome of that meeting led directly to me losing my job, and suffering severe depression and social anxiety for two years.

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  2. You have here a wonderful blog! You have not only confirmed many of my theories and concerns, but you have shed a light on more than my daughter can describe or explain. Thank you

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  3. Thanks for the post, Aaron. I have had that frustration with doctors trying to understand an Aspie like me. (I have also felt that dealing with career advisors and potential employers, who I think are clueless about ASDs.) I haven't been to a doctor lately, but when I do, I wonder if that doctor will know a thing about my situation.
    Keep up the good work!
    Bob

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  4. Our son's diagnosis was delayed by two years because our doctor didn't recognize autism, and he couldn't point us to someone who could.

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  5. This is horrifying to me and it makes me sick! It also makes me VERY grateful that we have been fortunate enough to find the most wonderful pediatrician!!! I cannot fathom how people, especially in the MEDICAL PROFESSION, can go through life so disgustingly lazy and arrogant and IGNORANT! It is just this very thing that makes me screaming mad! THANK YOU Aaron for going out and educating and advocating for the Autism Community! You ARE making a difference and it is appreciated more than I can say!!!

    Karen
    www.chameleoninthespectrum.wordpress.com

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  6. I've sent you my story once, so you know I've had my share of ignorant teachers and psychologists too. I'm happy now I found my way though.
    In fact, I went to an autism information market today (for the first time). I've found some good information there for myself! (yay I can live together with my boyfriend AND get into a guidance appartment building!)
    I can just say to everyone... If your doctor/psychologist/teacher/etc seems to be ignorant and/or not understand you: DON'T be afraid to look somewhere else! Please don't immediatly loose hope and think nobody will be able to help you! There definitely are good professionals out there. Keep on searching, it's worth it.

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  7. This is something I have to disagree with you... as you have to be very careful in saying something like this.

    From a professional point of view, I get it. So, I am going to try to explain it to you and your readers.

    1. The doctors don't generally ask what insurance the family or individual carries. That maybe is not their job to know... as the family and individual with autism (if he/she is an adult) should know. The doctors' assumptions is that the family or the individual suspected to have autism to make the phone calls to find the right person to do the screening and/or assessment.

    2. While a good doctor might ask where the family or the individual lives, but not always.

    3. The length of wait for the developmental pediatrician offices for diagnosis varies. As you and I know, a lot of people in this situation want the answer one way or another ASAP. The only way to know is to make these phone calls. It is NOT the doctors' business to know the up to the minute information on how long the wait might be.

    4. There can be politics within the professionals front, too! I see that in my hand therapy internship as I was interning at a private practice. The hand therapist (aka my clinical supervisor) prefers patients from some doctors over others, as some doctors send her lots of patients, but some doctors rarely send her any. I can imagine it is similar thing with the dynamic with developmental pediatricians and doctors.

    While there are some obvious cons and can be perceived as impersonal, I like what the doctor did in your example, actually.

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