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Levels On The Spectrum
A MyAutismTeam Member asked a question 💭

My daughter got diagnosed as moderate ASD.
I don't hear much about it. Most People say their kids are either low or high functioning. How can I tell the difference as far as where my child is on the spectrum. She is verbally delayed and her cognitive levels are good. Most people probably would not notice she has Autism when they first meet her. Would she be considered high functioning?

posted July 23, 2014
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A MyAutismTeam Member

20% no longer qualifying for a diagnosis with intensive treatment is the high end of the range I've seen. Usually I see it given as 10-20%. It is also up for debate if they have fully recovered or if they still face residual challenges. That said, many more children with ASD see significant improvements in their functioning level, even if it's not enough to lose the diagnosis entirely.

posted July 24, 2014
A MyAutismTeam Member

The labels whether ASD (various severity), ADHD, or SPD, or PDD, Asperger, or whatever that are subjectively diagnosed under DSM criteria (the broader spectrum), simply means that that we don't really know what is physically wrong with your child, but based on symptoms, let's call it this or that. But what it really means is that your child clearly needs help - what and how much help is really dependent on each child.

There are studies by Deborah Fein on optimal outcomes in ASD whereby 20% of high functioning group (however that might be defined)were able to lose diagnosis and be indistinguishable from peers. That is promising for sure. However, I have also heard about non-verbal kids at two years old with moderate to severe ASD diagnosis actually lose ASD diagnosis by the age of five as well. I wouldn't consider the labels to really mean anything other than get all the specialized help to try to change your child's trajectory, both from a therapy as well as medical perspective.

posted July 24, 2014
A MyAutismTeam Member

I believe the 20% stat from two Fein studies are applicable to HFA group only, not broadly to ASD. Her definition of optimal outcome (i.e. recovered) was very high - indistinguishable from peers, not just losing diagnosis which is a lower threshold. Another study by another researcher also found 20% optimal outcome rate but it was a small group. Regardless of %, the key message here is that while all groups can make significant gains with intensive intervention; a subset of kids can and do lose diagnosis. The objective regardless of which group is to change trajectory, which has higher impact if done early.

As an aside, I had posted a recovery case study which was published on a patient that developed what looked like regressive autism (anti NMDA receptor autobodies) after febrile illness - fortunately was caught early enough and treated successfully with IVIG and steroids. The unfortunate part of the ASD label is that it usually prevents further medical investigations.

posted July 25, 2014
A MyAutismTeam Member

My son is exactly the same way... verbally delayed, high cognitive skills and diagnosed with ASD. For the longest time I was obsessed with trying to find out if he was high functioning, low functioning, PDD, etc. now after a year, I am accepting that no child with ASD is the same and it can vary so much. I did get good feedback from this site, other parents as well as talking with my neurologist. I also have him in speech, ABA and OT and it is very helpful. :-)

posted July 25, 2014
A MyAutismTeam Member

The actual label does not mean much other than trying to explain it to someone. How well the child does in regards to education and evaluations is what you would want to concern yourself with. Just having the ASD diagnosis is going to qualify your child for certain things, but the educational assessment is where your services are going to come from, and a label means nothing to the school.

posted July 24, 2014

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