Overcoming Misdiagnosis: The Path to Autism Awareness

The full article by an anonymous writer can be found in National Survivor User Network. This article mentions mental health treatment, hospitalisation, misdiagnosis, self-harm and eating disorders.

My self-discovery of autism was the result of burnout at work and a chance realisation about my autistic relatives. The spark of a family connection meant I launched into researching autism in my usual all-out way. I devoured books on autism, feeling as though they held a mirror to my life.

I remembered the girl I once was the sensitive soul who walked on tiptoes and felt painfully self-conscious. The girl who fainted when asked to read aloud in class, who knelt on the floor as chairs were uncomfortable, who fixated on teachers. The vulnerable girl who became an adult and was swallowed up by mental health services. She gave up her identity by copying other patients’ self-harm and absorbing their pain.

Services excluded that undiagnosed autistic girl.

The reason I clung onto mental health services for so many years was that I didn’t know how to live outside of them. I felt safer in hospitals being re-fed for anorexia because there was a regime to stick to. I wish I could have known about autism during my first hospital stay aged 18, so that I could have asked for the help I needed to transition. Health services viewed me as overly dependent. No one saw that I was lost in a world where I felt like a different species and needed someone to guide me.

Once deeply harmed by the psychiatric system, my autism realisation offered new self-understanding; I can now re-assess my past through a self-forgiving lens and feel awe for my survival now. I don’t feel as much shame over episodes where I couldn’t foresee the consequences of my actions, when I know that I was doing my best at the time and never stopped trying to be a good person. 

I look back on letters from psychiatrists and the clues were there. The avoidant eye contact, euthymic mood, binary answers, refusal to join group therapies. Psychiatrists didn’t grasp how I could be in acute distress but calm on the surface. I know now that alexithymia means that many autistic people can’t name or identify how we are feeling. Unless the offer of further appointments was made explicit, I would go away feeling as though I couldn’t be seen in outpatients again.

If you have a historic diagnosis of BPD and think you may be autistic:

• Self-explore initially and look at screening tools. Search for autistic writers, advocates, audiobooks and podcasts. As you find out more about autism, you will recognise whether this reflects your inner experience. It is important to grasp early on that every autistic person is unique.
• Formal diagnosis of autism may be needed when it comes to welfare benefits or access to health services or to alleviate ‘imposter syndrome’. First you need to see your GP who makes the referral for assessment any history of PD diagnosis is likely to trigger a more ‘complex’ assessment. Be prepared to wait if going for assessment on the NHS.
• Right to Choose allows you to be referred through the NHS and opt for a private provider. Choose carefully and seek others’ experiences through online communities. The assessment quality matters to the outcome, it isn’t just a case of getting seen sooner.
• Check with local health services whether they are likely to accept your private provider recommendations. You can research the providers your Integrated Care Board uses for autism assessments.  
• All providers should be NICE compliant, using recognised diagnostic tools. Good assessment providers will also offer a feedback session and a detailed report of recommendations.
• Make sure the provider, private or not, will assess without an informant if you have no one from your childhood to answer questions.

There are many barriers around formal diagnosis such as waiting lists, the cost of private routes, diagnostic tools designed from assessing boys and difficulties involving informants from childhood. Self-identification is 100% valid and accepted. A formal assessment will bring up a lot that can be painful about childhood experiences and relationships. You need support on this journey.