My Experience Being a Woman and Going Through the Autism Diagnosis Process
You don’t know me. I might be like you, or I might not. But, if you’re also female and on the spectrum — or think that you may be — there’s one thing we have in common: at some point we have either gone through or are thinking about going through the autism diagnosis process.
I am a 38-year-old, cheesecake-loving, twirly dancing, catastrophically bad singing, Twitter-obsessive, female advocate of all things that would make owing a pet dragon a reality. I am autistic. I don’t have “mild” Asperger’s, nor is it just a “personality” thing. Despite being referred to as “high-functioning,” it’s not just a little thing that affects some parts of my life. I am “actually autistic.” And the way I first discovered this? I was first tipped off to the fact I may be autistic by a quiz on Facebook and a character on a children’s television show in the UK called “Tracy Beaker Returns” (as the late, great Carrie Fisher once said, “If my life wasn’t funny it’d just be true”).
By the time I discovered I was on the autism spectrum, I was 31 years old living independently in a different country and had recently been hospitalized from being significantly ill. I didn’t understand what autism really was, and it’s not something I had experience with as part of my day-to-day. So to go from not knowing the name of the thing to having this world suddenly explode into existence around me was quite the colorfully volcanic existential crisis.
Once you suspect you may be on the autism spectrum, making the decision to go forward with a diagnosis might be one of the biggest and most life-affecting choices you will make. If you’re like me, the exact moment you realized you may have found the answer to why you have always felt so different will be indelibly marked in your memory. You stand at a crossroads at the start of a journey towards fully knowing who you are. Some people are happy to self-diagnose, and just having that understanding works for them. I depend more on absolutes; maybe you do, too. There is no right way for every person, so you can only go with your gut instinct.
Because conventional thinking and diagnosis still seem to lean towards boys who are more often identified autistic as young children, there are still vast amounts of girls and women out there who remain undiagnosed. Finding out information about the diagnostic process is not easy. There are things I wish I had been told. And I believe that — in the name of awareness — no one else should find out they are autistic via Facebook and the BBC scriptwriters. For anyone out there who is thinking about starting this journey, I’ll share some options to prepare yourself based on my experiences.
In the U.S., you’re often advised to contact your general practitioner (GP) to discuss your concerns and ask to be referred to an appropriate psychologist or social worker. In the UK, where I was diagnosed, you can go privately, but my understanding is that lots of GPs have historically insisted you must be assessed by the National Health Service (NHS). This can be a long and difficult path, and you can find useful information via the National Autistic Society. I can’t speak for the experience in the U.S., but as the diagnostic tools are universal, I imagine the steps of how to prepare yourself personally can be much the same. Unlike the diagnosis of physical ailments, where a doctor will listen to your symptoms and explain your illness, you may need to explain to every health professional you encounter why you think you are on the spectrum. You will be asked to complete questionnaires like the Autism Spectrum Quotient.
In my experience, there were three gate-keepers between me and my diagnosis (in the UK):
- My GP
- Local Commissioning Mental Health Team
- Autism Spectrum Diagnosis Service
Throughout the journey you may come up against issues such as, “we don’t like to label people,” or a failure to recognize what the condition looks like in females. The entire process, with waiting lists, can take some time. It can be hard, and you will need to persevere to see it to completion. Work is being done to improve the experience and waiting times of adults going through the system, and the NHS is world-class in its services, but it remains that it will not be easy.
Keep in mind that it is your right to receive an appropriate diagnosis and your right to understand who you are. And you must advocate for yourself. So make sure you are fully prepared for appointments. Take notes with you if necessary and be prepared to ask for second opinions if you disagree.
Once you have your diagnosis, it may take time to process it emotionally. Regardless of what you knew that you knew, it marks both an end point and a new beginning. You’ll have difficult days and you may experience a plethora of acceptance and grief for the life that you had before, the difficulties you have encountered and the friendships you may have lost. But finding peace is possible.
Vast amounts of work needs to be done to improve awareness and acceptance of all facets of the autism spectrum and what it looks like among the community. There are still huge challenges ahead, but I am confident that the more people are prepared to speak out, the more acceptance will be garnered for our community. Maybe if you are like me, you will see it as something to be celebrated and looked forward to, because we all exist on a spectrum of humanity that merges into one another, and we can only operate as such when we become a truly cohesive society.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image by Minerva Studio