How many times do we hear or read about blokes like this???
Man has a late-life epiphany: I have Asperger's syndrome
Growing up, Paul McAuliffe says he "felt like a Martian." He was always saying the wrong thing or overreacting, but he didn't know why. Then several years ago for his job as a case manager, the Panama City resident started reading online about the symptoms of autism.
"And I said, my God, that's me," recalls McAuliffe, now 57.
The doctor's official diagnosis was no surprise: Asperger's syndrome, an autism spectrum disorder that impairs social skills. "I joke that one would've liked to have had this diagnosis, say, a half century ago," McAuliffe says. "That would've been helpful."
Still, he focused on the present, devouring in equal measure books about "Aspies" and neurotypicals — people not on the autism spectrum.
"They are the folks we have to interact with in order to live our lives," says McAuliffe, who is on an advisory board for the Center for Autism and Related Disabilities at Florida State University.
For McAuliffe, a lifelong musician, American Indian flutes help grease the wheels of his interaction with neurotypicals. He travels the Southeast giving a presentation called "Flutes, Autism and a Different Way of Seeing.''
Parents can help children cope, an 'Aspie' says
McAuliffe describes what he has learned about his brain as "empowering." In hopes of empowering others even earlier, here are some tips he offers for parents of children on the autism spectrum.
1. Always presume intellect. Researchers are finding that even kids who are nonverbal often have high IQs. Be on the lookout for new-tech ways to communicate with your child.
2. Routine is important. Those on the autism spectrum need to know they have safe, comfortable and dependable routines at home even when learning new things and experiencing new situations.
3. Encourage friendships with other children on the spectrum. There's an intuitive resonance — a bond — between those with autism, and it's a relief to spend time together and compare stories. Of course, friendships with neurotypical kids are crucial, too.
4. Encourage the child to be neurologically "bilingual." As kids get older, reading Dale Carnegie's How to Win Friends and Influence People can be a real eye-opener.
5. Speaking of eyes, children need to learn to fake eye contact. Encourage them to look at the mouth, the forehead, the bridge of the nose — whatever works.
6. Spectrumites tend to really get into certain subjects; that's why they're inventors and innovators. Encourage children to get into subjects that will help them in the world as they get older.
7. Always make sure children have an escape route for any social/crowd situations, which can be excruciating. Make sure children have a quiet place to go if they get overwhelmed due to sensory overload. McAuliffe emphasizes how empowering it is for a spectrumite to know he has a measure of control.
8. Don't be a know-it-all. To deal with the neurotypical world, children need to learn that even when they know they are right and someone else is wrong, it isn't always good to say so.
9. Most important of all: Help the child cultivate a sense of humor. Be able to see the humor in social gaffes and in human behavior in general.
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'?”
- 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! 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 valued resources for further information. And try to 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.”