Friday, December 12, 2008

What does "high functioning" mean?!?

High functioning autism. What is that?

When I think of autism, I think of children who don't talk, don't look you in the eyes and flap their arms. I have an adopted cousin who is autistic. She flaps. Nick flapped once. It was in a store. I could barely control him. Everyone who looked at us just thought that's how he was and gave me understanding looks. Some even smiled - as if to say that they understood -- but they did not understand. Inside, I was praying that God would help me get him out of the store without getting hurt or knocking anything over. It was as if aliens abducted my son and gave me this one in his place: an impostor! What the heck happened to him?

I will never forget that arm flapping, squealing, writhing experience as long as I live. I told myself that it was only his blood sugar or some type of freak, isolated experience. Maybe he was tired and hadn't slept well or maybe he was about to come down with a shopper of a cold! He had, after all, eaten either a Milky Way or Three Musketeers candy bar, just minutes before we arrived at that store. Dumb candy. No more candy bars on an empty tummy, that's for sure. nope - no more candy bars.So then, what is high functioning autism?

Generally speaking, doctors prefer to group people with autistic symptoms into discrete diagnostic categories. Rett syndrome and Fragile X syndrome are relatively clearcut disorders, and thus are likely to be correctly diagnosed.

Classic autism is also fairly clearcut: Children with classic autism are usually non-verbal, unengaged, and unable to perform well on standard diagnostic tests.

But then there are the people who are high functioning but also demonstrate clearly autistic behaviors. For example, depending upon their age, they can use meaningful language, read, write, do math, show affection, complete daily tasks but can't hold eye contact, maintain a conversation, engage in play, pick up on social cues, etc. What is the correct diagnosis for such a child? Is it Pervasive Developmental Not Otherwise Specified" (PDD-NOS)? Asperger syndrome? High functioning autism?

PDD-NOS is a catch-all diagnosis. Often understood to mean the same thing as "high functioning autistic," it really incorporates individuals at all function levels whose symptoms don't fully correlate with classic autism. So a PDD-NOS diagnosis may provide some information to parents and teachers but cannot guide treatment.

Asperger syndrome is a much more specific diagnosis, with specific diagnostic criteria. Until recently, the biggest difference between Asperger syndrome and high functioning autism was based on whether a person developed speech typically as a toddler. Those who did develop speech typically were considered to have Asperger syndrome while those who did not (even if they developed typical speech later) were diagnosed with autism. Now, experts are wondering whether speech development is the best way to distinguish between autism and Asperger syndrome or if there even is a difference.

High functioning autism is not an official diagnostic term, though it may be used as such. It tends to describe people who have many or all of the symptoms of autism but did not develop language typically. It's a helpful diagnosis that can help guide appropriate treatment and school placement.

One useful explanation of the difference between Asperger syndrome and high functioning autism comes from the National Autism Society in the UK. Here's what it says:

  • Both people with HFA and AS are affected by the triad of impairments common to all people with autism.
  • Both groups are likely to be of average or above average intelligence.
  • The debate as to whether we need two diagnostic terms is ongoing. However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions
  • Although it is frustrating to be given a diagnosis which has yet to be clearly defined it is worth remembering that the fundamental presentation of the two conditions is largely the same. At the same time, all people with autism or Asperger syndrome are unique and have their own special skills and abilities. These deserve as much recognition as the areas they have difficulty in.
  • Asperger syndrome can be a difficult disorder for children and their parents. This disorder brings difficulties socializing and communicating with your child. It may also mean fewer play dates and birthday invitations and more stares at the grocery store from people who don’t understand that a child’s meltdown is part of a disability or health condition, not your parenting.

    Another big help for you is to learn about your child. With some time and patience, you’ll learn which situations and environments may cause problems for your child and which coping strategies work. Keeping a diary and looking for patterns may help.

    The tendency to fixate on a particular narrow topic is one of the hallmarks of Asperger’s syndrome, and it can be annoying to those who must listen to incessant talk about the topic every day. But a consuming interest can also connect a child with Asperger’s syndrome to schoolwork and social activities. In some cases, kids with Asperger’s syndrome can even turn their childhood fascination into a career or profession.

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