All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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04 February 2010

Misperceptions About Diagnosis of ASD in Adulthood

Some people believe individuals identified with Autism Spectrum Condition in adulthood have less impairment and better overall functioning across the board. This is a perfect example of a biased belief that does not apply to all individuals identified in adulthood. It is a myth that serves to disadvantage late-diagnosed adults, as well as undermine healthy views toward this population. 

Some autistic adults may have been previously misdiagnosed with conditions such as ADD, intellectual disability, OCD, a personality disorder, schizophrenia, et cetera. This is especially true for adults born before autism was included in the Diagnostic and Statistical Manual of Mental Disorders (though autism is contained and defined in the DSM, autism is a neurological condition that is classified as a developmental disability. It is NOT a mental disorder).

Asperger’s was not introduced into the DSM until 1994, which explains a notable percentage of adults recently identified as Asperger's autistic (it's important to note that these adults are often included in current autism statistics). 

Should we assume that individuals who meet the requirements of an ASD diagnosis in adulthood (of which a mentionable percentage may have been hospitalized or suicidal at one point in their lives) have little to no support needs due to their acquired ability to often pass as what is perceived to be normal? Does learning how to cope with, cover up, or even hide a disability mean than a person is not really disabled, or that such a person has grown out of a disability? I strongly disagree.

How do such assumptions positively foster understanding of late-diagnosed autistic adults? It takes a lot of courage to question or seek an autism assessment as an adult. Autistic adults--in addition to those who are deeply familiar and personal with autistic adults--have related that in many cases, the functioning or impairment of an autistic adult may actually be similar to what may be seen in autistic children, yet the autistic adult’s ability to compensate for it, or hide it, may be anywhere from mild to moderate to extreme in sophistication.

Some individuals who are diagnosed as having ASD in adulthood may have light support needs. Others may have moderate or heavy support needs. These needs can and often do vary over the course of a lifetime (ex: light needs one season or year, and moderate or heavy needs the next). Day to day variability across the lifespan, and task-based variability, are important points that are in no way tied to what age a person is when diagnosed with an ASD.

Most, if not all, individuals on the autistic spectrum have uneven skills and strengths. An example of this would be an autistic person who is a computer whiz, yet challenged or completely incapable when it comes to attending to self-care needs, checking the mail, grocery shopping, housekeeping, or preparing a sandwich. It is important not to box and rigidly classify individuals on the spectrum by using only functioning levels, which are subject to incongruence and variability.

Myths about autism and late-diagnosed adults too often lead clinicians, community members, families, and service providers to believe or say unfortunate things to late-diagnosed adults on the spectrum. Some examples:
  • “The fact that you can walk into my office and ask for a diagnosis means that you cannot possibly have an ASD;”
  • “I don’t agree that you have an ASD. You seem to have a great sense of self-awareness, plus you are quite articulate;”
  • “You get overstimulated in daily life? So does everybody;”
  • “You think your employment issues are related to autism? You’re just lazy;”
  • “Your level of intelligence makes it hard for me to believe that you could possibly have any support needs;”
  • “You have friends plus a significant other? No. Autistic people are incapable of that;”
  • “You don’t look or seem autistic. My cousin and my best friend’s children are autistic and you are nothing like them;”
  • “Your ASD is very slight, if that. The fact that you have received a diagnosis in adulthood means that you are obviously capable in daily life.”

I am profoundly deaf. In addition to American Sign Language, I successfully use a cochlear implant. My cochlear implant has significantly increased my speech intelligibility. Acquaintances and strangers may not ever suspect I have a profound hearing loss. Matter of fact, if someone were to ask an acquaintance or stranger if they think I am deaf, they may likely respond with something like, “No, E. could not possibly be deaf. She hears and speaks to me just fine.” And they would be absolutely certain.

But in reality, I am deaf, and without the use of ASL, my ability to easily communicate in situations where there are either a lot of speakers or significant background noise, I am at a loss. Without my CI, my world is nearly silent (which I happen to like). I do not try to pass as a hearing person, but I cope with my deafness in a hearing dominated world by advocating for my needs. 

Does the ability to set up ideal communication or hearing environments whenever possible make me any less deaf? Not according to an audiological instrument that measures hearing loss.

My deafness is a HUGE issue when it is not accommodated, yet it can easily be undermined or go undetected when I have appropriate useful assistive devices, communication, and support in place. Without such supports, the change in my functioning level (outside of my comfort zones) is immediate and radical. Take away my ability to advocate and set up ideal environments and there would be absolutely no room for denial in regards to my hearing loss. 

The same goes for my diagnosis on the autistic spectrum.
I am self aware enough to know how to set my world up so I can function best. I know what to avoid, and I constantly strive and struggle to know what routines, support, and whatever have you I need to be my most successful in life. I am a highly self-determined individual. But again, without the supports I have in place, my whole world would come crashing down and the person I am with intact aid would become significantly less functional. The last thing I would need at that point is for someone to deny me assistance based on misleading assumptions, perceptions, or myths.

I cannot put words to how adverse, damaging, demoralizing, and depressing it is for autistic adults who have gathered enough skills to fit in—in this often unforgiving world—to not always be able to count on being taken seriously by the very people who are appointed to help them.

Most individuals identified as having an ASD in adulthood have less impairment and better overall functioning? I disagree. I recommend something more appropriate and useful, such as: autism may present differently in adults than it does in children.