“High-Functioning Autism” Descriptor No Longer Being Used

girl with autism and momQ. Audrey was diagnosed with an autism spectrum disorder at the age of nine. She is exceptionally bright, so she switched to the advanced academics program at her school in third grade. However, her social skills unfortunately prevent her from fitting in with her typical peers, and she often has a challenging time making friends.

When she describes her daughter to others, Audrey’s mom says that her daughter has “high-functioning autism.” I too have a special needs son in the same boat, and heard recently that that descriptor is no longer being used. I also heard that a few years ago when the latest diagnostic manual came out, the DSM-5, the diagnosis of Asperger’s is no longer being used either. So, are people who are gifted academically, with social skill deficiencies, just called “autistic?” It doesn’t make sense to me that they are diagnosed the same as someone who is non-verbal and needs a lot more assistance. Thanks for clarifying!

A. “High-functioning autism” is a descriptor that has been used a lot for people with autism spectrum disorder who don’t have an intellectual impairment. But a recent study suggests that term should not be used at all.

The descriptor, “high-functioning autism,” was first coined by researchers in the 1980s for people who had autism but did not have an intellectual disability. Although the descriptor was originally used to portray people without an intellectual disability, it somehow has crept into a more generalized everyday use.

According to researcher Gail Alvares, unfortunately “‘high-functioning autism’ has come to imply that people can manage perfectly fine, and don’t experience any everyday challenges.” Researchers, including Alvares, believe that “high-functioning autism” is a misnomer for this reason and therefore should not be used to describe individuals with an autism spectrum disorder (ASD).

A recent study, which appeared in the journal Autism, looked at IQ and people’s adaptive functioning, which refers to the age-appropriate skills persons needs to take care of themselves. The study examined data on 2,225 people ages 1 to 18 with autism, about half of whom had intellectual disabilities. Researchers looked at how the children’s IQ scores compared to how they performed on a measure of functional abilities known as the Vineland Adaptive Behavior Scales. Among those with intellectual disabilities, the children’s functional abilities aligned with their IQ score, the study found. However, for the children with average or above-average IQ scores — those who might be called “high functioning” — functional abilities remained well below their IQ.

The findings were that “high-functioning autism” is an inaccurate clinical descriptor when based solely on intelligence, because the term “functioning” encompasses a much wider range of abilities. According to Alvares, “(t)he implication of this study is that children given this ‘high functioning autism’ label are not just presumed to have better functioning than they really do, but they actually have far greater challenges with everyday skills than the label would suggest.”

Scientists believe that the term can actually put these children at a disadvantage. Here’s how:

  • Support is still often needed: It might be used to argue that a child should be able to go to a mainstream school without support when in fact, support is needed.
  • Children may still struggle in certain areas: While they may perform well on cognitive assessments, they still struggle with skills such as understanding instructions, note-taking, self-care, changes to routine or interacting with their peers.
  • Children may be denied needed services: By continuing to use this term, we may be inadvertently denying people access to services and support that they need based solely on their IQ.
  • There is a need for comprehensive diagnostic evaluations that incorporate functional assessments, in addition to the IQ testing, to guide service provision and funding allocation.
  • Individuals who are not receiving all of the services they need are at risk of falling further and further behind their peers.

Asperger’s is No Longer a Descriptor Either

In 2013, the diagnosis of Asperger’s was removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and people with these symptoms are now included within the autism spectrum disorder along with autism and pervasive developmental disorder not otherwise specified (PDD-NOS).

The new autism spectrum literally lumps all autism diagnoses into a single category. That means that people with very severe challenges, who are non-verbal, intellectually-challenged, and in need of significant daily support for basic life skills will have the same “title” as those who are, for example, completing graduate school and having a difficult time relating to peers or managing loud parties.

The new autism, however, does describes people as having a severity level between one and three, based on their need for support. Most people who had a prior Asperger syndrome diagnosis or were referred to as “high-functioning” qualify for a Level 1 diagnosis, meaning “in need of a relatively low level of support.” Again, as was mentioned earlier, although these individuals may not have cognitive disabilities, they still need support when it comes to social skills and everyday life skills.

Do You Have a Loved One with ASD?

As you can see, parents whose children were previously known as “high-functioning” or those who may have had an Asperger’s diagnosis in the past, have reason to be concerned that their kids are not going to magically stop needing support as they become adults.

Consider a Special Needs Trust

If you have a loved one who is disabled (whether mildly or severely), it is wise to consider creating a special needs trust. A special needs trust is an essential tool to protect the financial future of a disabled individual. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the disabled person’s name. Special Needs Trusts fall generally into two main categories:

Third-Party SNTs that one person creates and funds for the benefit of someone else.
First-Party SNTs that are created for the person with special needs using that person’s own money.

Both “first party” and “third party” Special Needs Trusts are created for the benefit of an individual with a disability, but have some significant differences. Read my article on this subject for a detailed description of these and other types of special needs trusts.

Let us Assist You with Special Needs Planning

When it comes to special needs planning, we can guide you through this process. Please contact us to make an appointment for a no-cost initial consultation:

Special Needs Attorney Fairfax: 703-691-1888
Special Needs Attorney Fredericksburg: 540-479-1435
Special Needs Attorney Rockville: 301-519-8041
Special Needs Attorney DC: 202-587-2797

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