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Asperger Syndrome Diagnosis in Adults

How a diagnosis of AS is made in adults:

Many AS adults happen to read, hear some information or be told by a family member or friend about Asperger Syndrome. Some may believe that the information matches their history and their current situation and, as a result, may self-diagnose. Others are not so welcoming of the diagnosis.

Sometimes family members suspect that their adult child, spouse or sibling may have AS and wonder how to tell them about it.

Professionals, even some who have had long-term relationships with their clients, may realize for the first time that the traits their client is exhibiting are best described by Asperger Syndrome. A professional may be uncertain of the diagnosis, however, if Asperger Syndrome is outside his or her area of expertise.

After the question of Asperger Syndrome is initially raised, many adults and their family members wonder, “Should I pursue an 'official diagnosis'?”

Why:

  • For some individuals, doing their own research through books, on the Internet and through support and information organizations, like AANE, provides enough answers and the best explanation yet of challenges that one has faced and strengths that one possesses.

Others want the corroboration of a professional.

  • Official diagnosis is necessary if one wants to apply for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).
  • A diagnosis is needed to request reasonable accommodations for employment under the Americans with Disabilities Act (ADA).  See Adult Life Planning: Employment for more information.

How do you get an “official diagnosis” of Asperger Syndrome?

  • Many individuals pursue neuropsychological testing with a neuropsychologist (PhD) or a psychiatrist (MD). As a result of this testing, it may be determined that the individual has Asperger Syndrome, something related to AS, or something different. This will give a fairly full picture of strengths and challenges and of how one’s brain processes information.
  • In addition to those with an MD or PhD, any professional with the credentials and expertise to diagnose any other condition may also make a diagnosis of Asperger Syndrome. Such professionals may be social workers (MSW), master’s level psychologists (MA), or other mental health professionals.
  • Neuropsychological testing is not required to get an “official diagnosis”. To apply for SSI there must be written documentation in the record from an M.D. or PhD. that there is some type of a psychological issue (not necessarily AS). There is no requirement of psych testing. The other issues regarding inability to work may be best described by other clinicians.

Is it ever too late to discover AS or seek a diagnosis?

  • Never. It is never too late for an individual to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Knowing about Asperger Syndrome gives the individual an explanation, not an excuse, for why his or her life has taken the twists and turns that it has.

What one does with this information at the age of 20, 50 or 70 may differ, but it is still very important information to have.

In early adulthood, one may use the information to plot a course through college:

  • A single room to decrease social and sensory demands and to have a safe haven
  • Take classes part time (to account for executive functioning/organizational challenges)
  • Possibly live at home (to minimize the number of changes all at once)
  • Join interest-based groups (so that socializing has a purpose)
  • Plot a career that matches interests and abilities
  • Request reasonable accommodations at school or at work

In middle adulthood, one may use the information to:

  • Do a life review, understand why careers and relationships have or have not been successful
  • Improve on relationships or pursue better matches
  • Ask for accommodations at work, or pursue work that is more fitting

In late adulthood, one may use the information to:

  • Do a life review
  • Renew and/or repair relationships affected by AS
  • If possible, customize one's environment to be comfortable and accommodating to the strengths and challenges of AS

Regardless of age, one may use the information to:

  • Find people who share similar interests
  • Find other people with Asperger Syndrome with whom to compare notes (in-person or online)
  • Consider disclosure to family, friends, co-workers
  • Work differently with helping professionals (with an emphasis on concrete coaching help, building of life skills vs. insight-oriented therapy)

For family, friends and co-workers:

If I know someone who I think has Asperger Syndrome, should I tell?

  • YES! At AANE, our bias is that it is better to know than not to know. If you have AS and don’t know, it affects you anyway; if you do know, you may be able to minimize the negative impact and leverage the positive.
  • Without the knowledge that one has AS, one often fills that void with other, more damaging explanations such as failure, weird, disappointment, not living up to one’s potential, etc…

How do I tell an adult that they may have AS?

  • Lead with strengths! Most people with AS have significant areas of strength (even if this has not been translatable into tangible success).
  • Bring up areas of strength with the person with suspected AS.
  • Next, point out the areas in which they are struggling.
  • Then, suggest to them that there is a name for that confusing combination of strengths and challenges, and it may be Asperger Syndrome. You may lead them to www.aane.org or other resources for further information. Provide support along the way.

Common responses to this information may include:

  • RELIEF: “I’ve always known there was something different about me!”
  • ANGER: “How come no one ever told me before? I’ve lost so much time and opportunity not knowing!”
  • DENIAL: “I don’t have that.”
  • TAKES ONE TO KNOW ONE: “If that’s me, it’s you, too!” (or other family members)