Many High-Functioning Autism (HFA) grown-ups happen to read, hear some information, or be told by a family member or friend about HFA. 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 has HFA 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 HFA. The professional may be uncertain of the diagnosis, however, if HFA is outside his or her area of expertise. After the question of HFA is initially raised, many grown-ups and their family members wonder, “Should I pursue an 'official diagnosis'?”
For some individuals, doing their own research through books, on the Internet and through support and information organizations, 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.
A diagnosis is needed to request reasonable accommodations for employment under the Americans with Disabilities Act (ADA). Official diagnosis is necessary if one wants to apply for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).
In addition to those with an MD or PhD, any professional with the credentials and expertise to diagnose any other condition may make a diagnosis of HFA. Such professionals may be social workers (MSW), master’s level psychologists (MA), or other mental health professionals.
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 HFA, something related to HFA, or something different. This will give a fairly full picture of strengths and challenges and of how one’s brain processes information.
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 HFA). There is no requirement of psych testing. The other issues regarding inability to work may be best described by other clinicians.
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 HFA 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:
- Take classes part time (to account for executive functioning/organizational challenges)
- Request reasonable accommodations at school or at work
- Possibly live at home (to minimize the number of changes all at once)
- Plot a career that matches interests and abilities
- Join interest-based groups (so that socializing has a purpose)
- A single room to decrease social and sensory demands and to have a safe haven
In middle adulthood, one may use the information to:
- Ask for accommodations at work, or pursue work that is more fitting
- Do a life review, understand why careers and relationships have or have not been successful
- Improve on relationships or pursue better matches
In late adulthood, one may use the information to:
- Renew and/or repair relationships affected by HFA
- If possible, customize one's environment to be comfortable and accommodating to the strengths and challenges of HFA
- Do a life review
Regardless of age, one may use the information to:
- Work differently with helping professionals (with an emphasis on concrete coaching help, building of life skills vs. insight-oriented therapy)
- Find people who share similar interests
- Find other people with HFA with whom to compare notes (in-person or online)
- Consider disclosure to family, friends, co-workers
If you know someone who you think has HFA, should you tell? YES! It is better to know than not to know. If you have HFA 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 HFA, 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 HFA?
Lead with strengths! Most people with HFA 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 HFA. 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 HFA.
Common responses to this information may include:
TAKES ONE TO KNOW ONE: “If that’s me, it’s you, too!”
RELIEF: “I’ve always known there was something different about me!”
DENIAL: “I don’t have that.”
ANGER: “How come no one ever told me before? I’ve lost so much time and opportunity not knowing!”
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