Moving OFF the Spectrum….?

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“Then, when Marcus was reevaluated at the age of 5, he went from Autism Spectrum Disorder – Moderate, to just Autism Spectrum Disorder.”

I looked at my friend and nodded.

“That is what happened to Declan’s diagnosis as well.”

She returned my nod and followed with, “I am so thankful for early intervention services.  I can’t imagine where we would be right now if we had not had so much help from the start.”

“You’re right,” I added, “I completely feel the same way.”

Moving on the Spectrum

When Declan was first diagnosed the evaluator told me if I did not feel Declan met the diagnostic criteria for Autism Spectrum Disorder (ASD) I could ask to have him reevaluated in 6 months.  I was told that he would be reevaluated anyway at the age of 5.

I gave a curt nod, collected my new pile of paperwork and left the board room I was seated in.

In the weeks that followed, as I grieved – thinking the tremendously hard day-to-day living was never going to change with this new diagnosis – I was comforted in the thought provided to me by consolers

“When he is reevaluated, they could take him off the spectrum.”

As if the word “autism” alone determined Declan’s prognosis in life.  Without that word – he would be fine, we would be fine.

But as days turned into weeks, weeks turned into months – I saw the autism I hadn’t seen before.  And as Declan worked with services, I saw change I hadn’t seen before.

His needs were being met.  He was given support and allowances.  He was happy.

Moving OFF the Spectrum…?

One idea that I completely support is that autism is a whole-body disorder.  Declan has numerous sensory issues, a sleep disorder, proprioceptive issues, gastrointestinal issues, motor coordination issues, repetitive behaviors, outwardly aggressive with a history of self-injury, trouble paying attention (unless watching a preferred You Tube video or playing an X-Box game) and issues with communication.

Declan continues to work on all the above.  Although, I agree, his issues are not nearly as severe as when he was 2, 3 or 4 years old.

I am forever grateful Declan was diagnosed with ASD.  He was given the help he needed, we were given the help we needed as a family and we are all the better for it.

When I spoke with my friend about our son’s journey on the spectrum, going from the middle of the spectrum to the left, we both agreed on one thing.

“I don’t ever want someone to come along and take my child off the spectrum.”

Every day we see the struggles our children face and the ways our kids try to handle them.  Without support and services, we wouldn’t see our children sparkle and shine like we do now.

At home, If I were to take away Declan’s medicine for sleep, or his weighted blanket.  If I removed his trampoline or took away his computer.  If I told him his obsession with Spiderman was too severe and took him away.  If I used his trigger words, and constantly told him “NO!”

In other words, if I took away all the things we use to help Declan cope.  If Declan lost all the support he requires at school – you wouldn’t see the same Declan.

The concept of moving off the spectrum also raises a bigger question.

If autism is a neurological disorder, how can you move off the spectrum?  Who is moving off the spectrum?  Who is moving kids off the spectrum?

In my research I learned there is a percentage of individuals once diagnosed with autism have achieved “optimal outcome.”  They no longer fit the criteria for an ASD diagnosis because:

  • most of the time an ASD diagnosis is removed, a new one is put in it’s place. Anxiety Disorder, OCD, ADHD – some other diagnosis pops up
  • Some studies indicated that the earlier a child is diagnosed and treated the higher the chance they will be moved off the spectrum.
  • Some children were higher functioning when they were first diagnosed.
  • Some children were misdiagnosed by non-specialists.
  • And one interesting point – many parents indicated they knew their kids did not have ASD but requested the diagnosis to obtain the services their child needed and could not obtain otherwise.

Huh.  How about that.

The idea that an individual can be moved off the spectrum is still kind of strange to me.  I am reading that individuals are, indeed, being moved off the spectrum.  That they were labeled as autistic – but “recovered.”

To me, I know the things we do for each one of my kids – to help support them and allow for them to have more good days and good experiences than bad ones.  Just because they may look “fine” on any given day, I know how easily that balance could be knocked.

So, I do not support the idea of “recovering from autism.”  If one was truly on the spectrum one does not “move off the spectrum.”  Would you say Temple Grandin has moved off the spectrum?  Bill Gates, Dan Akroyd or Daryl Hannah?  Just because a person can mask their symptoms, or have found ways to cope, does not take away the core of a neurological disorder they are living with every day.


13 thoughts on “Moving OFF the Spectrum….?

  1. Moved off the Spectrum? What a bunch of poopie! You can’t run Android programs on an Apple system. They’re both computers but the run differently. An autistic person’s support needs may change but not the way their brain works.
    Things like this can hurt the autistic community. I’m with you on this. I do NOT support this idea

  2. I suspect that Bill Gates, Dan Akroyd or Daryl Hannah (I don’t know who Temple Grandin is) don’t feel that they’re off the spectrum. Coping isn’t curing. Since I know nothing about life with autism, I’ll try to draw a parallel with Tourette Syndrome. When I was in high school I was cured of Tourettes. All my tics cleared up and my feeling like an oddball went away. Or so I thought. I now know that I was suffering from Tourettes just as seriously through HS and college even though I was tic free. The doctor-checklist symptoms were gone, but the disease was still present. And the Tourettes symptom that the doctors don’t check for, substance abuse, ran rampant. I believe calling these individuals “cured” is wishful thinking. They will do better if they continue to get the necessary support that has already helped them live an easier life.

    1. I agree completely. I like the way you put it too, especially “Coping isn’t curing.” That is what I feel people in “recovery” are doing and why they are being diagnosed with other things like anxiety, OCD, depression. Someone is taking them off the spectrum and telling them they are “Okay” when they are simply trying to cope and presenting with some other (maybe more visible) disorder.

    1. Thank you! Yes – same here. Once on the spectrum, I do not think people should be moved off. If they are having a good day, a good week or even a good year, they are still just coping. No one should be moving people off the spectrum.

  3. I wonder what criteria must be met to be considered “recovered”? My daughter has sensory issues, but the signs are very intermittent. Like you said, it is easy to throw off that delicate balance. If they were to move your son off the spectrum, could you repeal their decision? Possibly have him re-evaluated?

    1. I know, I wonder how they determine if a person is “recovered” or just coping very well. But yeah, coping is not curing. I don’t think anyone is going to be taking him off the spectrum. But if the school ever wanted a reevaluation completed, I would have the evaluation done privately. I would not trust the school’s agenda or purpose in that.

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