Those who know me well, know how Autism has impacted our family, as well as MS and other health issues. Diabetes is just one in a list that our family deals with on a daily basis. Close friends have stated to us in the past, that if we took everything that has impacted my brothers/sisters and families; we would give Job (biblical character who had a real tough life) a run for his money.
As people also know, none of this stops us and we all continue moving forward and doing what we can in the areas that impact us personally. Each of us has to deal with life. I share this (and will not go onto detail) because with the many things we deal with, I always have my antenna up as news comes across my desk.
Today there is news out there that Autism is now registered to impact 1 in 68. Autism is part of what is commonly called the Autism Spectrum Disorder (or ASD). According to Wikipedia: The autism spectrum or autistic spectrum describes a range of conditions classified as neurodevelopmental disorders in the fifth revision of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders 5th edition (DSM-5). The DSM-5, published in 2013, redefined the autism spectrum to encompass the previous (DSM-IV-TR) diagnoses of autism, Asperger syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), childhood disintegrative disorder, and Rett syndrome. These disorders are characterized by social deficits and communication difficulties, stereotyped or repetitive behaviors and interests, and in some cases, cognitive delays.
If you are on FB, type in the letters, ‘A-u-t-i-s-m’ and you’ll see how many pages there are dedicated to Autism efforts. I have a very interesting tidbit for you also: The origin of the now hugely popular Autism walks was also the brains behind the origins of the JDF(JDRF) Walk for the Cure now the Walk to Cure Diabetes. A man by the name of Steve Leonard—-another story for another time but the brilliance of charity walks, which solely rests on the wonderful volunteers being involved, was Steve’s design.
Autism Spectrum Disorders has a ton of blogs by parents, online support, and a huge amount of wonderful people making a difference as they battle what impacts them personally. Here is my thought and know that mine is just a question. It is not to stir a bee’s nest or anything like that but it was a question I had and I am very interested in your input.
There are many aspects of the Autism Spectrum Disorder. Do people who are involved with Asperger Syndrome think they should not be connected to (let’s say) someone involved with Rhett Syndrome. Will there come a time when the labeling of ASD will replace any individual names of diseases.
Type 1 (T1) and Type 2 (T2) diabetes used to have 2 different names as Juvenile Diabetes and Adult Onset. Not saying they were correct but they were the names nonetheless. Somewhere they became just T1 and T2. Will the names within the ASD eventual become T1 ASD, T2 ASD, etc? To be clear I want to add that neither of the two names of diabetes fit completely into the names they were labeled but I ask, with the new names; how’s that going?
There clearly has been grass-roots efforts to change the names of various aspects of diabetes. I sort of like the idea that Autism has undertaken in the word; ‘Spectrum’. Imagine creating The Diabetes Spectrum Diseases; where all of the various types of diabetes fall under one umbrella; but all with different names.
What the individual names would be? I have no idea. But it is the beginning of a thought process…..yes? What are your thoughts?
I am a diabetes dad.
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0 thoughts on “The Diabetes Spectrum Diseases (Notice the Blue)……..Perhaps We Should Take a Page from Autism…..Your Thoughts?”
Ronnie Gregory M says:
Here is my problem with the diabetes names issue…Most of your ordinary citizen’s diabetes IQ is very poor at best. The problem lies in the obesity issue which while in on itself is not accurate it really depicts diabetes as a self caused easily cured, poor diet, soda drinking couch potato bunch of people.
again in there lies the problem. The people pushing for a diabetes name change are those T1’s who are tired of being lumped in with T2’s and being perceived negatively. No disrespect to you Tom or any other parent of a diabetic child but the last time I heard of this issue was two ladies who are parents of D children pushing for a name change (on change.org) because they were tired of their kids being abused. To me that in itself is a bad motivator for change on so many levels that a name change will not solve to say the least but I regress. I say put all our efforts in advocacy and education and if that fails then by all means change the name but by then will a name change even matter??
No disrespect taken—-you bring up valid points and should further the discussion——THAT is my only goal. If I had the answer…….well I don’t have the answer; that’s why I ask. Thanks for sending along your comments, which are ALWAYS welcome. My comments are not gospel (goodness knows THAT is true), clearly, they are only mine and stated to get people talking.
Tom, I agree with the evolution of the diabetes titles, but I agree more so for type 2 and the fact that public exposure to diseases is most commonly through cancers having stages with higher numbers being worse; therefore, confusing the general public.
As for the stand on types for diabetes my Endo (I agree) insists insulin resistance (IR) is the correct term in place of pre diabetic ( your body makes insulin but something is saying go away) and that insulin dependent (ID) should be the progression. I know this might inflame others who cope with type 1, but it does make the quality of care better accepted. No one intentionally set out to be obese. But when you eat like even the skinniest of your friends and you don’t lose weight why would you keep trying, especially since they eat the unhealthy stuff on occasion.
As for a better name for type 1 I am not sure but something simple like autoimmune destroyed – insulin dependent (ADID).
L. Chisholm says:
I liked your commentary very much. I developed “grey” area diabetes at age 38. I never had a honeymoon period. I still take the same few units of meal time injected insulin. I am now 59 and I have started to reduce my long acting and I am getting much better A1C results. My endo says I am type 1, my orthopedic doctor says I am classic type 2 now with neuropathy in my feet, a gp once told me I had “brittle” diabetes. I am normal weight. Now recently they are linking C-sections in women with early onset type 2. I had two before I just stayed home and had a normal birth.
I have struggled with normal bs control with menopause. I now think I actually developed fibromyalgia in my teens and the diabetes was a side effect knowing what kind of symptoms I have dealt with.
Its too bad our medical system does not look at the ancient medical analysis of things like fibromyalgia. They actually run away due the complexity of diagnosis.
Thanks for the ponder.
Matthew Crabtree says:
I know I am totally late to the game on this as its 5yrs old, but I came across this as I am gathering data on pushing for placing diabetes on a spectrum. I am a T1DM and a current internal medicine resident with plans on going into Endocrinology fellowship. I believe that categorical diabetes creates a stigma for both types. As for T2DM, its automatically assumed that they are unhealthy, high bmi, insulin resistant. This is not necessarily true(ie Halle Berry is T2DM). And while it is true that increased fatty deposits increase insulin resistance, it is more complex than just eat less and work out. It has been studied that there are “T2DM” that have antibodies which would technically qualify for T1 but these antibodies are “weak”. Therefore, they do not have outright destruction of beta cells and appear insulin resistant(really just not producing enough). In conclusion, I agree with DiabetesDad, a spectrum would helpful and better guide treatment for individuals instead of just throwing every T2 on metformin and every T1 on just insulin(T1 can become insulin resistant as well and other can benefit from GLPs and glifozins cardio protectiveness but are FDA approved for T2). some idea to place on spectrum: Insulin dependent vs non insulin dependent, insulin resistance vs not, antibody positive or not, ect
Better arriving at “the game” late than not at all!
Thanks for writing and chiming in.
Have a GREAT Holiday season.