Female Autism/Aspergers: My Journey To An Adult Female Autism/Aspergers Diagnosis

by | Sep 28, 2015

It’s time for me to talk to you about female Autism/Aspergers, and this is my scariest blog post ever. I’ve been very excited to share this news with you, but also terrified at how people would react. Ultimately, I decided that it was important to share my story, because it was another woman’s blog post that helped me on my journey to getting a female Aspergers diagnosis. Yes, I have Aspergers Syndrome/Autism. So much of my life now makes sense to me, and I’m finally starting to understand myself in ways I never did before.

A quick note on the language I use: my first diagnosis was for Aspergers, so I wrote this article using that word. “Aspergers Syndrome” is now no longer something that professionals are diagnosing—as of the DSM-5, it’s “Autism Spectrum Disorder.” I’ve added the word “Autism” to this post as an update, but because people still occasionally use the world “Aspergers,” I’ve left it in this article. That way, people can find this post whether they’re looking for information on Aspergers or Autism.

My journey to a female Autism/Aspergers diagnosis

In March 2014, I was browsing through my blog feeds on Feedly, and I came across the following blog post by Jen Saunders: “I’m Coming Out Of The Autism Closet.” I read through the entire post, fascinated by Jen’s story of how she came to understand that she might have Aspergers and her journey to a positive diagnosis.

I went online, reading as much as I could find on Aspergers in women, including Tania Marshall’s “Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome,” which Jen links to in her blog post. The more I read about women with Aspergers, the more I began to understand myself. I’ve been on a journey of self understanding and discovery for several years now, and this seemed to be the missing piece in the puzzle.

I became obsessed with researching female Aspergers for some time, and then somehow let go of it…until this year, when I was speaking with a friend who received a positive diagnosis for Aspergers. I asked her all about the process of getting diagnosed, and found out that in the UK you can get a referral from your GP. I instantly made an appointment to see my GP, where I requested one. She wasn’t very enthusiastic about it, but after a few minutes of questions, I got my referral.

Self diagnosis (and female Autism/Aspergers checklists)

As I waited for an appointment to get a female Aspergers diagnosis, I started doing more research, as my interest in Aspergers had rekindled. I printed out the full list of traits in Tania’s blog post, and highlighted each one that resonated with me. A total of 70% of the traits felt like they had been written just for me.

Then I found the free online tests at aspietests.org, which provide the The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R), the Autism Spectrum Quotient, the Empathy Quotient, the Systematising Quotient, and other tests. My results were strongly aspie in each one. I printed out and evaluated which of the traits on Samantha Craft’s blog post “Day 62: Females With Asperger’s Syndrome (Non-Official) Checklist.” I resonated with 83% of the traits.

Eventually, I grew so impatient with the wait to get an NHS diagnosis that I phoned the Neurodevelopmental Autistic Spectrum Disorders Clinic to see just how long the estimated wait was, and I was told that I’d have to wait at least another five months. It was then I decided that it was time to go private, and I began to research psychologists who specialize in adult female Aspergers diagnoses. I found one in Surrey who looked interesting, but I was really drawn to working with Tania Marshall, who gave Jen Saunders her diagnosis. I had read one of Tania’s books, I Am Aspiengirl: The Unique Characteristics, Traits and Gifts of Females on the Autism Spectrum, and I had the distinct feeling she was the right person.

Formal female Autism/Aspergers diagnosis

I contacted Tania’s office, and within a couple of days had an appointment for my two sessions with her. She requested information on why I thought I had Aspergers and a four page autobiographical account of my childhood and life up to age 25. She went through the documents with me on our first two hour appointment, and pointed out all the instances where I mentioned things that were consistent with traits that many women with Aspergers experience.

Tania requested more information from me between our two sessions, including my results from aspietests.org, a list of strengths/challenges from two people who knew me well, some childhood photos, and a list and examples of things I considered to be my special talents. We went through these materials on our second two hour session, and near the end of our call I was so excited to hear her say: “Congratulations! You have female Aspergers.”

I was so happy to finally have a diagnosis, my eyes welled up a bit, and a single tear popped out the corner of one of my eyes. I finally had a diagnosis. Tania sent me some further information to research: books to read, websites to check out, and assured me that she was available for further support if needed. I was so excited to finally have an explanation for who I am and why I’m so different from most other people: I’m aspie.

What is Autism/Aspergers?

It’s a condition on the autism spectrum (AS), and is considered to be on the “high functioning” end of the spectrum. This is why, if you know me, you might be surprised at this diagnosis. I’m really good at coping with my aspie challenges and also with pretending to be neurotypical (this refers to someone who does not display autistic or other neurologically atypical patterns of thought or behavior…basically, what many people consider to be “normal”). However, if you know me fairly well, you’ve probably been in at least one situation with me where I:

  • was socially awkward in some way
  • behaved in a way that totally surprised you because it just seemed really bizarre
  • didn’t understand a joke, or clearly took far too long to get it
  • spoke at an inappropriate volume (sometimes I can’t tell how loud I’m speaking, so I either speak too loudly or too quietly to overcompensate)
  • didn’t recognize you (yep, facial recognition is a problem for me…trust me, it’s not you, it’s me)

Those are some things that you might have noticed about me and wondered what was going on. This is not a definition of what Aspergers is, though…there’s so much more to it, and I don’t want to oversimplify things. Do check out Tania’s or Samantha’s lists to get a bigger picture of how Aspergers presents in women and girls. These are just five traits out of over 150 that I experience.

And if you didn’t ever notice anything different about me, then ha! I’ve been pretty damn good at hiding it and pretending to be neurotypical, as I mentioned above. I’m really tired now of acting like someone else, though. It’s exhausting.

Why do I need a label?

The tweet on the left pretty much sums it up. I don’t need a label, but I’ve found it useful. This is one thing I struggled with while I was waiting to get an NHS diagnosis. Did I really want to be labeled as being on the autism spectrum? I mean, technically…this means I’m autistic.

What I wanted from the diagnosis was to get a clearer understanding of who I am and why I’m different. My entire life I’ve felt like I didn’t belong here, like I was an alien from some other planet who had been dropped here with very little understanding of how human social stuff works. It always felt like everyone else had received the “how to be human” manual and I hadn’t.

My research thus far, and the additional information gleaned from my two sessions with Tania, have helped me get a better understanding of who I am and specifically why certain things are really challenging for me.

Why now?

I’m super happy with this diagnosis, because now I have language to describe all of the things I’ve found challenging throughout my life and now I understand my unique strengths (more on this in a minute). And I firmly believe that the time was right for this. I’ve done lots of self exploration over the years, peeling off the layers of crap and getting to know myself. And now I can see this diagnosis for the gift that it is.

While receiving a diagnosis at an earlier age might have been useful, as it would have given me a clear indication as to why I always felt so different, and it might have helped give me a kickstart with playing to my strengths, I’m glad I wasn’t diagnosed as a child. I was so shy and quiet and painfully unhappy to be me that I probably would have seen this as yet another weakness, something terribly wrong about me.
Now, at this stage in my life, I understand that this is who I am: the challenges and the benefits. And it’s all good. It’s just who I am.

The challenges of female Autism/Aspergers

I have lots of social and sensory issues: I can get sensory overload and have meltdowns sometimes. I get major social hangover after too much socializing and I need to sleep a crazy amount of hours to recover. Social interaction in general is a bit challenging. And so many more things (again, see the long lists created by Tania and Samantha…I resonated with 153 of the traits on Tania’s list and 154 of the traits on Samantha’s). It’s far too complex for me to go into here, and I don’t want to simplify it because it’s quite complex.

Plus, I prefer to focus on the unique benefits that female Aspergers gives me.

The gifts of Autism/Aspergers

There are so many benefits to having Aspergers that I don’t even know where to start. Here are my top favorite female Aspie traits:

  • Hyperfocus. When I’m focused on something, whether it’s writing, creating Facebook ads, putting together slides for a webinar, or anything else I enjoy, I get locked into hyperfocus. It’s like the rest of the world ceases to exist and I have tunnel vision aimed straight at my chosen activity. It helps me get stuff done in a flash. I focus, focus, focus until I’m finished. (The downside is that if someone interrupts me when I’m in hyperfocus mode, I can get irritable and snappy).
  • Special interests. Ever since I was a child, I’ve had special interests: I used to collect rocks, crystals, and shells; I started writing a series of books at age seven; I loved hiking in the hills surrounding my home as a teen. Currently, my special interests involve my business, podcasting, writing, painting, and nature walks. I’m very creative and I love expressing myself through words and images. I also love to retreat into nature to be alone, and I’m constantly reading books about other people’s walking adventures and reading up on trails I want to walk in the future. It’s a bit of an obsession. In fact, I’ve just written a blog post titled Hiking With Autism: How to Get Outdoors When You’re on the Autism Spectrum.
  • Autodidactism. I am exceptionally good at teaching myself to do things. I tend to get frustrated with traditional learning, like online courses and – worse – school or organized programs. I like learning at my own pace, which is usually at a much faster rate than courses will deliver, and I like picking and choosing exactly what aspects of a subject I want to learn, rather than being spoon fed whatever someone else has deemed important. I’ve used this skill to learn so many things over the years: online marketing, social media marketing, SEO, search engine marketing, simple graphic design using Photoshop and GIMP, creating websites using FrontPage, then Dreamweaver, then WordPress…and so on. If I want to learn something, I can and I do. Fast.

Related reading – Hiking With Autism: How to Get Outdoors When You’re on the Autism Spectrum

Aspiepreneur

You may have noticed that the three Aspie traits I chose to highlight under the benefits are things that make me ideally suited to be an entrepreneur. There are so many more reasons that women with Aspergers are well suited to be entrepreneurs, such as the ability to work from home (and thus reduce sensory overload that may result from sharing an office). Both my Aspie challenges and my Aspie benefits contribute to this being the best career choice for me.

What now

Now, I’m in the process of getting to know myself all over again…without the mask full costume I created to cope with my differences. I’ve spent my entire life carefully observing how neurotypical people behave, so I could act like them…and not stand out from the crowd like a weirdo. I became so good at hiding over the years that I didn’t even realize what I was doing.

Now, my life is all about unlearning those coping tools and getting to know the real me, who has been hiding deep down inside. I’m super excited to get started on this process, and I plan to work through my old Who Am I? Ready to Bloom activities, and perhaps even create a program for women with Aspergers to reconnect with their true selves.

What about PSYCH-K®?

Considering the focus of my business, you may be wondering why I can’t just reprogram everything using PSYCH-K®. I’m sure I could, now that I have the words to describe all of my challenges. But I most certainly do not want to “get rid of” my Aspergers entirely. There are just too many good things that come from my special brain wiring. My plan at this point is to start playing around with using PSYCH-K® to work specifically with the challenges that come from having Aspergers.

How you can help

Please share this blog post on social media. Pretty please. 🙂

Jen’s post was how I first suspected that I might have Aspergers, and if more women have access to stories like ours, it’s likely that more women will be able to understand themselves better, and to get a diagnosis if they choose to do so. It’s my hope that this post spreads far and wide.

If you’d like to interview me for your blog, podcast, or whatever…I’d love to. Just get in touch and let me know what you’ve got in mind.

How to Get a Female Autism/Aspergers Diagnosis

If you’re in the UK, the official procedure is to get a referral from your GP. Waiting time varies from one area to another, but seems to range from several months to a couple of years. My friend who was diagnosed earlier this year waited just a couple of months, but I’ve heard stories of waiting for 2-3 years.

If you’d like to go private, be sure to work with a psychologist who SPECIALIZES IN ADULT FEMALES WITH ASPERGERS. I cannot stress this enough. There is still so little research on women with Aspergers that many psychologists simply don’t have the training to accurately provide a diagnosis to girls and women…and this can lead to a misdiagnosis, which can lead to terrible consequences (I once heard a woman share her story about receiving electroconvulsive therapy because of a misdiagnosis).

Tania Marshall, who diagnosed both Jen Saunders and me, is available for Skype sessions (or clinic sessions, if you’re based in Australia) for diagnosis and support for women and girls with Aspergers. I highly recommend her, as she is a clear expert on female Aspergers and she’s a fantastic person to work with. I felt comfortable and supported at every step of the diagnostic process with Tania…and this is coming from a person who is a bit wary of psychologists. I haven’t had great experiences with therapy/counseling in the past. I’ve linked to her website at the start of this paragraph, and you can email her assistant here: [email protected].

Other Stories of Female Autism/Aspergers

Female Autism/Aspergers Resources & Reading

Online Communities for Women with Autism/Aspergers

HSP: The Highly Sensitive Person

If you resonate with some of the things on the lists I’ve linked to above, but somehow it doesn’t feel quite right for you, check out websites about HSP, such as http://hsperson.com/. The scientific term is “sensory-processing sensitivity” (SPS), and people who are very sensitive to external or internal stimuli may fall into this category.

2017 Update on My Female Autism/Aspergers

Autism ACCEPTANCE3 April 2017

It’s been over a year and a half since I first wrote this article. Since then, so many things have changed. I finally made it to the top of the waitlist for an NHS diagnosis, which I got. Of course, the DSM-V no longer considers Aspergers to be a diagnosis; it’s an autism diagnosis.

The NHS diagnosis was not as smooth and pleasant as my experience with Tania Marshall, whom I continue to recommend to this day. I loved my sessions with her as part of my diagnosis. It was very much a celebration of my differences, whereas with the NHS I felt like I had to prove something to them. It was a stressful process, rather than an exploration of my autistic traits.

How I’ve changed since my diagnosis

Since my diagnosis, I’ve been able to accept myself for who I am, which has made a massive shift in my life. I’ve been able to appreciate my differences, and to take advantage of my autistic superpowers. I’ve really stepped into my hyperfocus, which in 2016 allowed me to write six books — four business books, two on my long distance walks. I’ve been able to take care of myself better, including avoiding events that I know will drive me to sensory overload.

Essentially, I’ve been able to step more into being ME and spend less time acting like I’m neurotypical, in a sad attempt to fit in. That was always stressful, but it was so ingrained in me that I never realized I was doing it. Life is easier these days, just being ME.

Above all, it’s been about accepting myself for who I am, rather than trying to change myself. It’s been about managing my challenges rather than forcing myself to do all the things that neurotypical people find easy. My journey with Aspergers/autism has been all about ACCEPTANCE. And it’s been a beautiful process.

Autism Awareness

And that’s why I’m writing this update now, in April, when everyone is talking about Autism Awareness. The time for awareness has passed. People around the world are now aware of autism, something that wasn’t talked about when I was a child. This is a good thing.

But the time for awareness is over. It’s now time for acceptance. It’s time to celebrate our neurodivergent differences and help autistic people thrive with their differences, rather than looking for a “cure.” Most of the autistic women I know from the online communities I belong to don’t want a cure. They just want acceptance for who they are.

I’m not looking for acceptance from other people; I’m 43 years old and I’ve learned how to live with autism, and the important thing is that I’ve fully accepted myself. But there are others in this world who are still on the journey to acceptance…both people with autism and friends and family of autistic people.

Autism Speaks

And it pains me to see people changing their Facebook profile photo to support Autism Speaks this month. Because this is an organization that exists to support parents of autistic children, not people who actually have autism. I suspect that they are doing it with good hearts, ignorant of the unpleasant reality of this organization.

If you’re in the dark about why people with autism do NOT support Autism Speaks, check out these articles:

And if you want to support people with autism, in April or anytime throughout the year, I think most of us would say you’d do us a favor by supporting autism acceptance, not awareness. So instead of lighting it up blue (this is the Autism Speaks campaign), let’s light it up GOLD (Au). I’d love it if you would share this blog post online. Thank you! 🙂

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