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In the last decade, more and more women are being diagnosed with autism as teenagers and adults which has led to concerns about a ‘rising autism epidemic’. This increase in autism diagnoses is due to an increase in understanding of the complexity of the autism spectrum and ignorance of the fact that these newly diagnosed autistics have always been autistic. I fear that these concerns are leading to people claiming like they did a decade ago for ADHD that autism is being both wrongly and overdiagnosed. Sadly, we still have a long way to go in helping the world understand autism and autistic people.
For those of us who are late diagnosed, especially those diagnosed as adults in our 30s to 50s, it can be both a relief and a shock. A lot of our past difficulties suddenly start to have a context, but we are left with an important question – what now? In this series, I will share the stories of some late diagnosed autistics and some things to consider in terms of the next steps in your life journey.
A&D’s story –
I have always known there was something different about me, but my life has been complex and it was easy for those around me to assume that my difficulties were a result of early puberty or other challenges rather than what it really was, autism. When I was in my mid 30’s I reached a decision that I would probably never be able to function in a relationship and doctors were telling me that because of my early puberty, I should have children now or accept that I may never have children. I made a difficult decision to have children through IVF via sperm donor. A decision I didn’t realise my family was wary of, believing I wouldn’t be able to cope as a parent. I was fortunate and after only 3 attempts I was able to have a beautiful baby girl followed by a beautiful baby boy two years later. My family was surprised by my ability to be a good parent especially after my mum passed away.
Fast forward two years after my son was born, after a long battle trying to get medical and allied health professionals to take his delays seriously, my son was diagnosed with autism. I was a teacher. I had taught autistic children. But I realised upon my son’s diagnosis that I knew little about autism. I focused on learning as much as I could about autism and one day when reading a journal article on two women who had been wrongly diagnosed with bipolar disorder instead of autism, I realised I was autistic. I had been told I had depression for over a decade, which I disagreed with as I had experienced depression and knew I wasn’t depressed. Among my difficulties, I had scripted conversations all my life, had significant social difficulties, difficulty reading people’s facial expressions and body language and I lived by a very rigid set of rules designed to mask my difference from the rest of the world.
My children came first and I knew if I was autistic then my daughter (a mini-me) was also autistic, so 5 months after my son’s diagnosis my daughter was diagnosed at the age of 4. It would be another 2 years before I would seek my own diagnosis. The first person I saw refused to take me seriously and l learned that many medical and health professionals still understand very little about autism despite being qualified to assess for autism. I gave up for a while until I met a lady who had been diagnosed with autism and was similar to me. I sought a diagnosis from the person who diagnosed her who was highly respected in the medical community for her knowledge of autism. Despite being unable to explain why I might be autistic she was able to collect the evidence to diagnose me with autism level 1,1 which was later reassessed and updated to autism level 2,2 when I reached autistic burnout a year later.
After the update of my autism diagnosis, I was able to apply for the National Disability Insurance to get my own therapy and support. I have often been asked to talk to people seeking a late diagnosis or those who are early in their autism journey and I realised there is a large number of people who are being late diagnosed and then just left to determine the next steps on their own. After my initial diagnosis as a level 1,1, I received no support or suggestions of what to do next. Only those who go on to apply for NDIS then get support. When my children were diagnosed, we were connected to autism advisors but that was never done for me as an adult, especially as a high-masking adult who appeared able to function well in society.
A&D’s recommendations for late-diagnosed autistics
1. Connect with other autistics and autistic or neurodivergent-led groups and organisations.
2. Determine how much you are masking and how much support you will need if you were to
completely remove your mask. This requires a certain level of self-reflection, if you are unable to do this alone seek out friends or family or a neurodivergent-friendly psychologist that can help you work through this process. Masking is damaging and too much of it can lead to autistic burnout and mental health issues.
3. Determine if there are any other comorbidities involved such as ADHD, OCD, PDA, PSTD, etc that you might also need support for which are intensifying your autism.
4. Continue your education about autism and co-morbidities, as it helps you feel less alone. You can also learn about the tools others have used to support a happy, fulfilling autistic life and see if these tools may help you. Remember you are an individual with your own autistic profile and presentation, not everything will work for you.
5. Seek professional support as necessary. I particularly recommend a neurodivergent friendly Occupational therapist and Psychologist. I also see a dietician and exercise physiologist for my comorbidities. I have access to a support worker when I am struggling to socialise or need help keeping up with daily living activities
6. Learn about the cup and spoon theories (see blog by that name) and be kind to yourself. A neurodivergent therapist will understand when you say that you are struggling to make progress because of a lack of spoons or stressors filling your cup.
7. Try where possible to educate those supporting you about how autism and other comorbidities affect you personally and what you need from them. If necessary, get support from other autistics or therapists to achieve this.
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