How an Asperger/autism spectrum diagnosis is made in adults:
Many adults with an Asperger profile stumble upon the description of Asperger Syndrome or Autism Spectrum. They may read about it or be told by a family member or friend about the profile. 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 and do not choose to identify with the label. Sometimes family members suspect that their adult child, spouse, or sibling may have an Asperger profile 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 as an Asperger profile or Autism spectrum difference. A professional may be uncertain of the diagnosis, however, if Asperger/Autism spectrum is outside his or her area of expertise.
After the question of an Asperger profile is initially raised, many adults and their family members wonder, “Should I pursue a 'formal diagnosis'?”
Choosing not to seek diagnosis
Many individuals choose to conduct their own research through books, the internet, and through support and information organizations (like AANE). Independent exploration can provide sufficient answers and confirmation that an Asperger profile accounts for challenges faced and talents possessed. Some individuals do not find that getting an official diagnosis is necessary.
Working with a professional
There are numerous reasons as to why someone might seek a formal diagnosis. For some, it can offer a clear avenue for communicating their strengths and struggles to friends and families. For others, it can open the door for needed supports:
- Formal 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 and Employment for more information.
How do you get a “formal” diagnosis of Asperger/Autism spectrum difference (ASD)?
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 ASD, something related to ASD, or something different. This will give a fairly full picture of strengths and challenges and of how one’s brain processes information.
The clinician will usually ask questions about your behavioral history, make behavioral observations, and administer various paper-and-pencil or computer-based tests to evaluate a range of cognitive, linguistic, and communicational abilities. When you go to see the clinician, be sure to bring with you any previous testing or other written records of past behaviors that stand out in your life. It is also a good idea to bring along a friend or family member who can provide additional perspective.
Any professional with the credentials and expertise to diagnose any other condition may also make a diagnosis of ASD. Such professionals may be social workers (MSW), master’s level psychologists (MA), or other mental health professionals.
Neuropsychological testing is not required to get a “formal” diagnosis. To apply for SSI there must be written documentation in the record from a medical doctor or Ph.D level psychologist that there is some type of a psychological issue (not necessarily Asperger/Autism). There is no requirement of psychological testing. Specific issues regarding inability to work may be described by other clinicians.
The variability of diagnosis
Keep in mind that the Asperger/Autism Spectrum diagnosis is not an absolute and fixed category of traits and characteristics. Everyone with this profile looks different and therefore the boundaries around this characterization can be challenging to define.
Historically, professionals have not even agreed on the constellation of attributes that define Asperger Syndrome and/or ASD. Asperger Syndrome was not a formal diagnosis until 1994. Asperger Syndrome has since been subsumed under the formal diagnosis of Autism Spectrum Disorder. We have yet to see how the categories will shift in the future.
Fewer females than males receive diagnoses of AS or ASD. This could be because professionals are still learning to recognize the profile as it is expressed in girls and women.
Because many adults have adapted strategies to navigate a predominantly neurotypical world, their differences might be less easy to identify than those of children which may result in fewer adults receiving an official diagnosis.
Is it ever too late to discover an Asperger profile or to 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 the Asperger/Autism Spectrum diagnosis 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 ages of 20, 50, or 70 may differ, but in all cases it can still offer great value and improve quality of life.
Young adults may use this self-knowledge to improve their college experience by:
- Choosing a single room to decrease social and sensory demands and to ensure a safe haven.
- Taking classes part-time (to account for executive functioning/organizational challenges).
- Possibly living at home (to minimize the number of changes to adjust to all at once).
- Joining interest-based groups (so that socializing has a purpose).
- Choosing careers that match interests and abilities.
- Requesting reasonable accommodations at school and/or at work.
In middle adulthood, individuals 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 to pursue work that is more fitting.
In late adulthood, individuals may use the information to:
- Do a life review.
- Renew and/or repair relationships affected by an Asperger profile.
- Customize their environment in order to be comfortable and accommodating to the strengths and challenges of the Asperger profile.
Regardless of age, individuals may use the information to:
- Find people who share similar interests.
- Find other people with Asperger profiles with whom to compare notes (in-person or online).
- Consider disclosure to family, friends, and/or co-workers.
- Work differently with helping professionals (by shifting the emphasis to 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 an Asperger profile, should I tell?"
YES! At AANE, our bias is that it is better to know than not to know. If you have Asperger profile 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 an Asperger profile, one often fills that void with other, more damaging explanations such as being a failure, being weird, being a disappointment, or not living up to one’s potential.
How do I tell an adult that they may have an Asperger profile?
- Lead with strengths! Most people with an Asperger profile have significant areas of strength (even if these have not been translatable into tangible successes).
- 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 an Asperger profile. You may lead them to AANE 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!”
Keep in mind that incorporating an Asperger profile into one’s identity is often an ongoing process of self-discovery and understanding that can be fraught with a range of emotions. This journey can be facilitated through non-judgmental and kind support.
You are not alone!
AANE is here to help you figure this out. Contact Adult Services to talk with some via phone, email, or to set up a consultation.