(& National Fragile X Awareness Day is July 22nd... so you might as well mark your calendar now, so you remember to wear your green)
I am not the most knowledgeable person on the topic of autism. I know some facts & I understand some of the treatments, but I do not live with autism (as far as I've always known)...
I do however live with a son with fragile x syndrome (fxs)... which just happens to be the most common known (single-gene) genetic cause of autism. Click here to read more about that.
Approximately a third of all people diagnosed with fxs also have autism. At a recent checkup with one of Hayden's specialists who is monitoring his current treatment plan, the doctor asked me when Hayden was last evaluated.
She also asked if I knew about the latest criteria.
The last time Hayden was evaluated was several years ago when we visited the MIND Institute, & at that time they were using a new criteria scale. There are two details I remember:
1. The scale began at the number 12. Any score below 12 was not on the autism spectrum & any score at or above 12, was. I am not sure how high the scale went, but I do know that autism is a very broad spectrum so I imagine it is quite high. They said Hayden scored a 12.
2. We were told this was because of his gaze avoidance.
Although some of the circumstances which often trigger difficult behaviors in Hayden are closely related to similar triggers for a person with autism, I do not agree with the specific "gaze avoidance" criteria.
One of the main reasons why Hayden was not diagnosed sooner, was because he has always been so engaging. Excellent eye contact... laughs when appropriate... cries when appropriate... displays empathy... very loving... & loveable. It seems everyone expects the complete opposite though-- particularly when global developmental delays are evident, & they are trying to determine a "hidden disability" (such as fragile x or autism).
Our visit to MIND was for both evaluation & study participation. So this was a reciprocal exchange of information, & therefore it was rather intensive & tiring. Both the facility & the people who fill it are equally pleasant, but it was a lot to cram in during such a short trip.
So if you ask me the gaze avoidance that the folks at MIND witnessed, was a combination of jet lag + strange place + unfamiliar people + a lot of participation expected, etc... which is basically a recipe for = leave me alone.
Back to Hayden's recent checkup...
The neurodevelopmental pediatrician shared the latest autism criteria. She explained that the medical community is evolving from the separation between autism & Asperger's syndrome... & that all related disorders are now going to be classified under the autism spectrum. The diagnosis code is DSM-5 in case you were wondering (also updated from the Roman numeral V, which she hand-corrected for me, on a printout of the diagnosis criteria).
Hayden's challenges also include Sensory Processing Disorder. Furthermore, familiarity with routine (including people, places & tasks) helps him be at his best.
I have never really thought about Hayden having much of anything to do with autism. And the last thing in the world I want is another diagnosis for my son.
But let me tell you this much... (& I am borrowing this quote that I have seen all over social media because it is SO true)... the discussion with the doctor made my heart see something that my eyes may have been missing.
So for my readers who are sort of opposite me because they know autism and/or live with it, but not fragile x... I'll just throw this out there...
Fragile X Syndrome is the most common known genetic (“single gene”)
cause of autism. - See more at:
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/#sthash.DlXIG05A.dpuf
Fragile X Syndrome is the most common known genetic (“single gene”)
cause of autism. - See more at:
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/#sthash.DlXIG05A.dpuf
Fragile X Syndrome is the most common known genetic (“single gene”)
cause of autism. Other genetic causes include deletions of chromosome
15q, tuberous sclerosis, PKU and other rare genetic conditions. - See
more at:
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/#sthash.DlXIG05A.dpuf
Fragile X Syndrome is the most common known genetic (“single gene”)
cause of autism. Other genetic causes include deletions of chromosome
15q, tuberous sclerosis, PKU and other rare genetic conditions. - See
more at:
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/#sthash.DlXIG05A.dpuf
Fragile X Syndrome is the most common known genetic (“single gene”)
cause of autism. Other genetic causes include deletions of chromosome
15q, tuberous sclerosis, PKU and other rare genetic conditions. - See
more at:
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/#sthash.DlXIG05A.dpuf
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(thank you, M, for sharing the awesome pic... & sorry for correcting the typo <3 blame it on my genes)
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