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I see many women who have autism spectrum disorder—or who suspect they may be on that spectrum and want to find out more—who don’t have an official diagnosis of ASD. And I see women who have been diagnosed later in life (one of my most recent clients received a diagnosis at the age of 62). Getting a diagnosis as an adult can be hard. So is it worth it?
Costs of getting a diagnosis:
Convincing your health care provider to start the process
If you are an adult woman and suspect you have ASD, your first port of call will probably be your family doctor. Like many women with ASD, you may have spent your life managing to adopt social norms and ‘blend in.’ When you visit your doctor, smile, and make some small talk, it’s possible that he or she will assume you’re too ‘normal’ to merit starting the process of contacting a psychiatrist. Further to your initial meeting, when your doctor has a chat with you about your life and it turns out to be ‘normal’ too—perhaps you’re in a career that suits you, you may have children and/or a long-term partner—he or she may dismiss the possibility that you’re autistic. There’s a great misunderstanding about ASD among medical practitioners and it may be very hard to convince your doctor to recommend you for psychiatric assessment. Many women’s primary health care providers will not initiate the process and it may be necessary to keep pushing your doctor to refer you or to change primary health care providers.
Being knocked back by the psychiatrist
If you do have a doctor who is happy to refer you, unfortunately this is only the first step. A psychiatrist will receive the referral from the doctor and then has to agree to offer you a psychiatric assessment. The doctor will likely have taken a summary about you before referral—including a brief discussion about how ASD affects you and how you live your life. If, at this point, the psychiatrist takes a narrow view of what ASD is and you fail to meet his or her criteria, they may refuse to offer you a referral. It’s extremely disappointing to be refused a referral. Some women keep fighting and may be successful in securing a referral while others give up going through their normal health care route at this point.
Failing the ‘tests’
There are a range of ASD tests which, initially, your doctor may go through with you. These tests are heavily biased towards men with ASD and fail to pick up on how many women with ASD experience their symptoms. You may ‘fail’ the test your doctor offers you, or attain a borderline score that may prevent them from referring you for psychiatric assessment. If you are seen by a psychiatrist who adopts a narrow (and male-focused) view of ASD, you may be misdiagnosed.
Difficult assessment
Receiving any psychiatric assessment can be a grueling process. The psychiatrist will be delving into all kinds of personal information. An ASD assessment takes several hours and usually involves talking to family members (such as a mother, where possible) to explore your childhood.
Financial costs
If you are unable to access a diagnosis through your primary health care provider, you may have to pay for an assessment. If you are doing so, it is worthwhile seeking out a professional who specialises, or has additional knowledge of, women with ASD. A psychiatric assessment can cost thousands of pounds which represents a considerable investment for most people.
Considering the effort involved, is it worthwhile pursuing a diagnosis as an adult woman?
There are many women whose lives have been completely transformed by a diagnosis. Receiving a diagnosis can help:
Make sense of the past
Perhaps you were considered a ‘weird’ child. Maybe it was hard for you to make and sustain friendships. Perhaps your naivety got you into scrapes as a child and throughout your adulthood. Knowing that there was a reason for your experiences can help you make sense of the past and move forwards in a more empowering manner.
Take the right decisions for you
Perhaps there are times in your life when you, or other people, have felt that you act in a selfish or overly structured way. Perhaps you’ve felt pushed into acting in ways that exhaust and drain you, simply in order to fit in. Receiving a diagnosis of ASD can help provide you with the awareness that it’s important for you to say no to certain things and to pursue things that help you manage your life. You’re not being ‘selfish’ when you say no to yet another social get together – you’re preserving your sanity because going to that event might take you three days to recover from!
Receiving the right help
When you have ASD, many forms of counseling and other therapeutic approaches will fail to help you in the way you need. When I’m working with women with ASD, the focus is often more on ‘process’—looking at how you process information and experiences and how you can adapt to meet these processing needs—rather than simply delving deeper into the content of what you are telling me. For instance, instead of assuming that a client who finds family sit-downs very difficult is coming from a point of deep-rooted emotional issues with her family (which may or may not also be present), I would explore the impact that ASD has in affecting how she experiences these get-togethers and how she can better manage them whilst meeting her needs.
Receiving an official diagnosis can offer verification and justification for the way you act. It may take considerable effort to access a diagnosis and it is important to know that, if you feel this is going to have a positive impact on your life, that you deserve to receive a diagnosis. There may be charities in your country that can offer support in your perusal of a diagnosis. Some women, given some of the difficulties described above, choose to "self-diagnose" and often conduct a considerable amount of research into women with ASD. If everything you have researched strongly supports a self-diagnosis of ASD, again you can take this learning with you in terms of how you make sense of past experiences and your current life. If you feel you would like more information about receiving a diagnosis or support for living with ASD, please seek out the help of a therapist who specializes in working with women with ASD.
To find a therapist, please visit the Psychology Today Therapy Directory.
