High Functioning Autism

Even just a decade ago, people with High functioning ASD were considered by many to be rare. Was this because they did not exist? No, it is because even recently, they were rarely identified as needing evaluation. Hans Asperger identified the characteristics in 1944, but it was not until 1984 that Aspergers was officially recognised as a diagnosis.The old diagnostic criteria left the language category vague, some interpreted it to mean that if the child could physically produce words, they were not autistic.

There are slightly more complex language issues that are now evaluated in children with speech such as their ability to use the words appropriately, grammar, tenses, abstract (when and why questions are more difficult than what questions) and the ability to carry a conversation. Before the revisions, doctors and educators often assumed that if the child could speak, they were not autistic- to this day, many providers maintain the old idea that the total absence of speech is required- even if the child demonstrates extreme signs of ASD in every other catergory.

As scientists and doctors learn more about ASD, kids who would have been labelled as "weird, odd, excessively shy, quiet or antisocial" are now being evaluated.

Some parents tell me that their child "has ASD, BUT is smart". I am always surprised when they use the word "but". Having a diagnosis on the spectrum does not automatically lower IQ. Some researchers suggest that a high percentage of people on the spectrum have lower IQs, some suggest an even mix and some suggest a higher percentage of those with above average to genius IQs. Really it seems to depend upon the study as to the percentages but please know that it is certainly NOT rare for a person on the spectrum to have an average or above IQ.

It is also important to note that several genes have been associated with Autism. The afore mentioned studies did not test the genes of the subjects to see if they shared the same condition. With numerous genes being associated with the symptoms of ASD, I personally feel that eventually the effect on IQ will be linked to the affected genes. If this is the case, then no rule could apply to ASD as a whole regarding IQ, but would rely on the underlying gene causing the ASD symptoms.

There are certain challenges about measuring IQ that must be taken into account. Many IQ tests require the subject to follow verbal or written directions to complete the test. This is problematic considering that one of the areas most affected in ASD is communication. Although people with HFA may speak, some still have difficulty interpreting language (especially within a time limit). Non-verbal tests are available as well but can still be inaccurate as it is impossible to know for sure whether an individual's failure to participate was because they did not know how to solve the problem, whether they even knew that they were being asked to solve a problem or whether they even felt like participating.

It is very common for people on the spectrum to experience ADHD symptoms as well. They may not even complete the entire test. My son's ADHD is so severe that despite numerous tests we still don't have an exact number... as the time starts to run out he abandons the test to play with the timer although even scoring 0 on all those he abandoned he still comes out with a score in the "above average" range.

There is a lack of available data regarding the exact numbers of people with ASD who have high IQs vs those with low IQs. Please keep in mind that often on the medical side, the IQ will not even be tested unless the doctor feels that there is a problem or if the parents request it. Typically the testing winds up being done by the schools. Privacy laws (in the US) prevent details of the testing from being shared for research. Occasionally schools may report the number of students with ASD and the number with low IQ, but in most states they are required to have at least 10 special education students to be permitted to do so (to help protect identity).

Still today many people do not seek testing unless there is a serious problem. The higher functioning the ASD, the less likely the individual (or their family) is to seek a diagnosis.

It is not uncommon for a person with HFA to be misdiagnosed at an early age with a psychological disorder such as bi-polar, schizophrenia, depression, BPD or OCD. Often they will simply be diagnosed as having ADHD. Around the age of 10-12, if they are lucky, someone will re-evaluate and notice that the diagnosis they have does not fit just right- then they will receive a thourough evaluation. Even now some doctors follow the old"wait and see" approach or simply do not know what to look for.

Ten years ago, the evaluation process was very different- only those considered to be more profoundly affected received team evaluations similar to today's. Today, there are entire teams that spend hours upon hours evaluating the child. They use standardized questionairres based upon research and look at the scores in all categories. Some children will receive a diagnosis of PDD-NOS, Atypical Autism, ASD or Aspergers.

Ultimately the label itself only matters as far as services go. Some insurance companies will not pay with a diagnosis of ASD, so the doctors may say PDD-NOS (as they are often used interchangeably anyway- ASD is a specific type of Pervasive Developmental Delay) and other insurance companies are the exact opposite.

Whether your child has HFA, ASD, PDD or Aspergers as a label, it really does not make much difference as far as how to manage the symptoms. There is no cure for any of them and all are managed based upon the child's individual needs. Some children with any of those diagnoses have severe behavioral problems while others have virtually none, some speak, others do not. Some have extreme sensory challenges. Regardless of the diagnosis, the child should be evaluated by a full team to determine which therapies are needed to target your child's individual challenges.
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A child with stereotypical "textbook" symptoms is far more likely to be diagnosed early and accurately. Medical providers are more likely to take a parent's concern seriously if the child can not communicate at all and displays stereotypical behaviors.

When our son was first diagnosed, he was considered "profoundly autistic". I voiced a few concerns to the pediatrician at 10 months when he stopped doing everything he had previously mastered, along with odd behaviors such as head banging, wandering gaze etc. Immediately he started therapy, by 12 months old he had his first diagnosis. Early intervention makes an amazing difference. We did all of the conventional therapies. In total we spent about eight hours a day every day doing the various therapies for about a year. We modeled speech for him avery waking moment of the day. We moved and lost services for a while so I did the therapies (as I remembered them) everyday until we got services again. At three years, he spoke. He had 46 words mastered by the time he started pre-school. At his pre-school, he received more services and we kept up what he was doing at home.

He has had many team evaluations- we are a military family and every time we move we start over from the beginning, keeping up the therapies during the process. He is usually diagnosed with ASD, Sensory Integration Dysfunction (SID), ADHD, and a severe speech delay.

He just turned 7 and most people can not tell that he is on the spectrum until they really spend time with him. He speaks pretty well, most people get what he says about 60% of they time, but he and I have our own language. At his last evaluation he was given a new diagnosis of HFA (along with the SID, ADHD and speech delay). The team suggested that at his next eval, if he continues to progress as he has, his diagnosis may be changed to Aspergers.

Now, please don't think that I am suggesting the therapy has "cured" him or changed the diagnosis.... the key here is that we keep it going. Even when he meets goals and is discharged, we continue to do the therapies with him. If we miss one week he regresses about 3 months. I hope that as his brain matures eventually we will be able to taper off (as an adult) and have him retain his progress but this is an ongoing struggle for him.


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