February 29, 2020

Worth it at Any Age: Professional and Personal Perspectives on the Benefits of Autism Diagnosis in Adulthood

Almost weekly, I receive at least one email from an adult who suspects he or she might be autistic. The events that have preceded sending the email, though initially unknown to me, punctuate a deeply personal, often circuitous and doubt-filled odyssey of self-discovery. My inbox and doorstep can be pit stops or extended stays in an adult’s search not only for an autism diagnosis but also for meaning to a life often sidelined by neurotypicality. 

Consequently, this email is neither the beginning nor the end of someone’s exploration of the intersection between autism and personhood. In an attempt to spotlight the before, during, and after of the diagnostic process, I asked a recently diagnosed autistic adult, Missy, to collaborate on this piece that seeks to illuminate the process of seeking an autism diagnosis in adulthood and the benefits of these anxiety-inducing, life-changing efforts. She agreed (because she is amazing and signed a ROI making everything perfectly legal). The format that follows poses questions answered from her personal and my professional perspective. 

Question: How do adults get diagnosed with autism?

Missy, Perspective from an autistic

3 Online test results

3 Checklists with approximately 14 clarifying notes

3 Tests sent to me by my diagnosing clinician prior to the appointment, with 13 clarifying notes

A detailed list of reasons why women are often missed in diagnosis, with references

The above list describes some of the contents of the ½-inch-thick folder I had stuffed in my bag the day I first met my therapist. After months of debating with myself, I had finally worked up the courage — ok maybe that’s not quite the way to describe it. After months of debating with myself, things had finally gotten bad enough that my desperation had overridden my anxiety, and I mustered a functional-enough mix of despair and courage to email one of the only two clinicians in a 100-mile radius whose websites said they worked with adult women on the autism spectrum. When she hadn’t responded after two weeks, I gave up and emailed the second. She responded the same day. I was hopeful, but terrified.

This was the email I sent to Jeanne asking for an appointment for assessment:

“Hello,

   I wanted to ask if you are accepting new patients. I am wanting to see about getting an adult assessment for Autism Spectrum Disorder.

   My name is Missy, I have been previously diagnosed with anxiety and ADHD but I don't think they explain the whole picture. I have done some research and reading on my own and the more I read about ASD (especially as the symptoms present in women) the more it seems to fit.

   I am interested in an assessment because the symptoms (especially sensory overload issues) are causing more difficulties in the last year or so. The sensory overload exacerbates my migraines, and more job stress as well.

Thank you for your time.

Missy”

I was very nervous going into the first appointment. Even though this appointment was the result of months of research, and I was almost certain I knew what the result would be, I was still nervous. I had read so many stories of women who had awful experiences when seeking a diagnosis, and those stories stuck with me as I walked into the office that day. I read story after story of disbelief. Of dismissal. Of distrust. Of outright denial of these women and their research and their lived experience.

“I read story after story of disbelief. Of dismissal. Of distrust. Of outright denial of these women and their research and their lived experience.” - Missy, on her reaction to women being denied an autism diagnosis

So you might be able to understand that while I knew that all my research had led me to what turned out to be the correct conclusion, and while Jeanne seemed perfectly friendly in our email exchange, and while I had my ½-inch thick folder of “proof” in my bag to back me up, I was terrified when I walked in the door that day. I was terrified when I sat in the waiting room and absentmindedly tried to scroll through something on my phone to distract myself until I was called back. I was terrified when the friendly-looking woman who turned out to be my absolutely AMAZING therapist came to get me from the waiting room and I fumbled to grab my bag and follow her to the office. And I was still so terrified that I cannot, to this day, remember exactly what I managed to tell her in that first appointment, but I’m fairly sure I told her at double or triple speed.

Jeanne had sent me several assessments that I had filled out and returned prior to my appointment. This allowed us to devote our appointment to talking, rather than taking assessments, which was much more comfortable for me. We talked about my history, discussing my childhood, school, my teen years, and my twenties. I had made sure to bring notes, since I knew I would be anxious, and I always forget things when I’m anxious. My notes helped me remember details like only ever having a very small group of 2-3 friends, or never learning social rules automatically like other people seemed to. I learned by copying other people, reading books, and watching TV and movies.

We discussed the things that still cause me issues today (sensory issues, social difficulties, emotional regulation, etc) and talked about how I felt like my previous diagnoses of anxiety, panic disorder, and ADHD didn’t fully explain everything. Jeanne asked me lots of questions, getting me to expand on things I had told her in the assessments and in our discussion. 

Because Jeanne has so much experience working with autistic women, she has a much better understanding than any other nonautistic I’ve met of how we think and how we experience the world. This made talking to her in that initial appointment much easier, as I wasn’t constantly explaining what I meant, rather I was repeatedly surprised that she just understood me. This is why having a diagnostician who has experience with autistic adults and especially autistic women, if at all possible, is so valuable. I was able to relax and focus on my experiences, thoughts, and feelings, instead of having to worry about translating those things for someone.

“[T]he relief of learning that I was right, that there was a name for why I thought the way I did, there were others like me, and, most importantly, that I was not broken, was so great that years of shame and guilt washed over and off me in waves.” - Missy, after her diagnosis 

While it takes more than one visit to officially diagnose someone with autism, she reassured me that first visit that I was “not barking up the wrong tree”. That phrase was so reassuring that not only do I still remember the exact words, I cried over them in my car after the appointment. 

Like my ADHD diagnosis almost ten years prior, the relief of learning that I was right, that there was a name for why I thought the way I did, there were others like me, and, most importantly, that I was not broken, was so great that years of shame a guilt washed over and off me in waves. As it turned out, I never even needed my folder of proof. She believed me, she believed my experiences, and she validated my feelings of frustration and so much more and having gone through 36 years of my life as a girl and a woman with autistic traits and no diagnosis.

Jeanne, Perspective from a professional

The short answer is: The same way as kids - interview, observation, and assessment. However, because you are an adult, you can exert more volition and meaningful control during the process. That translates to selecting a diagnostician with whom you feel comfortable asking questions before, during, and after the assessment process; from whom you receive accurate information, meaningful recommendations, and validation, validation, validation; and on whom you can rely to forge a path forward. 

That being said, I recommend evaluating your search for a diagnostician and  your diagnostic process with the following two guidelines. 

First, the diagnostic process is only as good as the diagnostician. 

A mental health professional (MHP) who has ongoing experience with autism across the lifespan, both diagnostically and therapeutically.

A MHP must have received (and continues to seek out and receive) extensive training from neurodivergent teachers, using tools designed for or approved by neurodivergent experts. 

A MHP who allows you to ask pointed questions about your diagnostician’s perspective about Autism Speaks, Applied Behavior Analysis, neurodiversity, and IFL versus PFL. 

A MHP who creates an atmosphere in which you can make environmental adjustments to meet your sensory needs, express all concerns, feel validated, and considers you a competent equal. 

A MHP who seeks out data from loved ones, such as via interview or assessment. 

Second, the information gathered (or not) by your diagnostician reflects how they conceptualize autism. 

A MHP should inquire about your experiences from birth to present day. An extensive developmental history should review your social, motor, and language milestones. Questions should address all aspects of your functioning, including: cognition, socialization, sensory processing, receptive and expressive language, daily living skills, and academic and vocational experiences. 

Since most autism measurement tools were developed for use with children and adolescents, diagnostic tools specific to autism’s presentation in adults are limited. We do not know as much about the applicability of the measurement tools to adults. As a result, a diagnostician may use tools normed for children solely to capture how your autistic traits have changed over time. Assessments, like the Empathy Quotient and the Autism Quotient, researched by respected autism researchers are preferable. The research-grade Autism Diagnostic Observation Schedule (ADOS) is a broadly used instrument that informs and steers much of the science of autism. Despite its broad use, little is known about the empirical variability inherently present in the scores of the ADOS scale. 

Use of personality assessments, such as the MMPI, tend to pathologize autistic traits into categories aligned with personality disorders, often misdiagnosed for autism. 

Question: Is there utility in being diagnosed as an adult?

Missy’s Perspective

In the years leading up to my diagnosis, my sensory sensitivities had become more and more pronounced. It became increasingly difficult to hide how painful loud noises and bright lights were for me, or how offensive I found strong smells such as perfumes and cleaning products. These particular sensitivities could easily be passed off as being related to my chronic migraines, but others weren’t so easy. 

After nearly five years with the same employer, a new uniform policy came down from corporate. I was just as upset as everyone else, but in an effort to “get along” and keep up my image as a “good employee” I masked my emotions and went along with no major complaints. Once the uniforms arrived, however, the mask began to slip.

“I was just as upset as everyone else, but in an effort to “get along” and keep up my image as a “good employee” I masked my emotions and went along with no major complaints.” - Missy, on why she had to mask her sensory experiences

You see, the pants were made of one of the most uncomfortable materials I have ever had the displeasure of wearing. While technically just a simple polyester/cotton blend, I would have sworn they were woven of fiberglass and stinging nettles. These hell-pants had no stretch, no give, and were the itchiest things I have ever had upon my body. I had a red rash from the bottom of my buttocks to just below my knees that only barely went away on weekends, and most days I climbed into my car after work and cried because I was so incredibly miserable.

My misery was only multiplied by the fact that I couldn’t understand WHY. Why was everyone else wearing the exact same pants and they were fine? Why was I this miserable, surely I was just being overly dramatic? None of it made any sense at all and finally one day I couldn’t take it anymore; I contacted a therapist for an autism evaluation. 

Yep, the hell-pants were the final straw that drove me to seek my autism diagnosis. Whatever works, right? As part of my accomodations, along with being able to wear headphones to cut down on some of the noise in my otherwise noisy office, I no longer have to wear the awful pants. Everyday life is a lot easier now, and all it took was a change of pants. 

Having the right diagnosis also means you can learn the appropriate tools and strategies to best manage your own mental health. I’m better able now to know ahead of time what situations will be uncomfortable (loud movie theaters) and how to mitigate the discomfort (ear plugs) so that I can still enjoy life with less discomfort.

Jeanne’s Perspective

Some people consider a formal diagnosis as an unhelpful label, but, for many, getting a thorough assessment and diagnosis is not just helpful, but life-altering.

A diagnosis should help you (and your family, partner, employer, colleagues, friends, neighbors) understand why you experience certain difficulties and what you can do about them.

A diagnosis can correct a previous misdiagnosis (such as borderline personality disorder) or complete your diagnostic profile if you have a pre-existing diagnosis (i.e., AD/HD).

An autism diagnosis entitles you to accommodations at your place of employment or academic institution. Your MHP should provide documentation essential to helping you acquire accommodations. 

Question: Is a diagnosis worth it for an adult?

Missy’s Perspective

YES!

Diagnosis has allowed me to finally understand myself in ways that just weren’t possible before. 

Diagnosis was extremely freeing for me because after 30+ years of believing I was a broken neurotypical, I learned that I am a perfectly functional, 100% whole autistic. I am now able to go back and rewrite so many of the inaccurate and hurtful views I have had about myself for so long. 

My diagnosis has also allowed me to go back and re-frame many of my personal narratives in a much more understanding way. I find myself being much more forgiving of not only my own, but of others’ past mistakes.

I’ve struggled for years to understand myself; the way I think, the way my brain works, how to manage my emotions, how to grow as a person etc. Nothing fully made sense or really “clicked” until I got my diagnosis. Now, with this extra information, I am able to understand myself on a much deeper level than before.

This isn’t to say that a diagnosis is a magic wand that will fix everything. It isn’t. It’s more like finally finding the guidebook in the middle of a trip to a foreign country. Or realizing you’re a Linux machine running in a Windows world. Or discovering that you actually are an alien from another planet (but don’t worry, there are a lot of us on Earth, you’re not alone!).

Jeanne’s Perspective 

A diagnosis provides validation to yourself. Perhaps, in your journey to the doorstep of a MHP, you have heard from family, friends, and medical professionals that you “can’t be autistic”, you are “too dramatic/sensitive”, or “everyone feels” like you sometimes. Perhaps you have been exhausted by repeated rebuffs and negations and, as a result, started to doubt yourself. A diagnosis can erase shame and doubt and return you to your rightful place as an expert on yourself. 

A diagnosis can jumpstart a meaningful process of discovery and understanding.  

A diagnosis can encourage you to find other autistics, from whom you can learn, help, and connect. 

Question: What are some indicators that your diagnostician is

(not the best fit for you) (not autism-informed)…?

Missy’s Perspective

If your diagnostician tells you "You can't be autistic because…" and gives you a one-note reason (you have friends, you can make eye contact, you're a woman, you would have been diagnosed earlier) RUN. Ok, maybe don't run, but leave and find someone else because that is …. bullshit.

Jeanne’s Perspective 

One of my diagnostic principals is leaving no stone unturned. This translates to a quasi-biographical approach to understanding the person sitting in front of me. I want them to talk about everything they want addressed (and more), to feel understood, and to have all questions answered. If your diagnostician does not make you feel this way, assess the extent to which these missteps bother you and, if needed, act accordingly by seeking out a second opinion. 

“My diagnosis has also allowed me to go back and re-frame many of my personal narratives in a much more understanding way. I find myself being much more forgiving of not only my own, but of others’ past mistakes.” - Missy, self-reflecting after her diagnosis

If your diagnostician does not conclude your evaluation with a detailed analysis of how you meet or do not meet diagnostic criteria for autism, in person and, if requested, in writing, you should request one. I have read far too many reports that conclude with a statement providing or withholding the diagnosis (e.g., “So and so meets diagnostic criteria for Autism Spectrum Disorder, Level ….) with no exploration of the data for each of the 3 criteria for Social Communication and Interaction and each of the 4 criteria for Restricted, Repetitive Behaviors. That is simply not acceptable diagnostic work. 

Would you like to contact Missy? Find her on Twitter @JenT0n1c

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