The Importance of Self Diagnosis

Self Diagnosis – whether of a set of symptoms or a condition entirely – is one of the most common reasons why you’ll decide to go to see a medical professional. 

So, why is self diagnosis for Autism and ADHD being shunned?

The excuses that are regularly used range from “self diagnosed individuals using up already precious resourses” to “self diagnosing insults those with an actual diagnosis”.

And, as someone who was self diagnosed and now has a diagnosis, I’m here to tell you why self diagnosis is entirely valid.

As I said, you only go to the doctors for help because you’ve diagnosed an issue – whether you’ve noticed a mental health issue or a physical symptom.

If you were to seek medical assistance for tiredness, struggle to focus, and constant fidgeting – you won’t be assessed or diagnosed with ADHD. Instead, you’ll be misdiagnosed as having Mixed Depression and Anxiety Disorder. 

If you seek medical assistance for anxiety in social environments, difficulties empathising, and struggling with emotional regulation – you’ll likely be diagnosed with Borderline Personality Disorder, instead of being assessed for Autism.

And, if you’re a woman, you’re 80% more likely to be misdiagnosed with a mental health condition like MDD, OCD, GAD, and BPD instead of Autism.

On top of all of this, there are two very frightening facts.

But first, let’s get this straight because nobody just decides to identify as Autistic or ADHD. They don’t wake up one morning and think I now have Autism. No, it comes from days to weeks, to even months or years of reading and researching, and comparing our own symptoms to those of the DMS-5 and other diagnosis materials.

Now, speaking specifically on Autism, why would anyone want an official diagnosis stuck with them when it gives them little to no benefit but an abundance of disadvantages?

Let me explain:

If you were to immigrate to the UK, New Zealand, Australia, and the US – you’d be rejected for having Autism. This was also the case for Canada up until recently. [1] [2] [3]

69% of diagnosed Autistic individuals are unemployed in comparison to our Allistic counterparts at 43%. [4]

On top of this, medical mistreatment towards Autistic people is on the rise. Back in the early days of the COVID-19 Pandemic, the NHS was found to be issuing DNACPR’s (Do Not Attempt Cardiopulmonary Resuscitation) for Autistic individuals [alongside Down Syndrome, ADHD, and other “learning disabilities”]. The NHS had to release a statement to their staff to remind them that this wasn’t acceptable. [5]

There are even parents who are willingly castrating their children due to a diagnosis of Autism – this is noted in the book To Siri With Love. [6]

In terms of the regular reasons people use to discount self-diagnosis:

No, self-diagnosis does not invalidate someone’s official diagnosis. We’re not all sharing one diagnosis certificate… It’s not a server where the maximum number of users is 500.

And, those who self-diagnose can’t use Autism resources… Care support for Autistic individuals isn’t provided on a first come, first serve basis. It’s based on diagnosis, care needs, and support already in placed.

Someone who is self-diagnosed is unlikely to get any support, other than a pamphlet, from charities and the government because self-diagnosis isn’t recognised by them.

If self-diagnosis has allowed someone to understand themselves better, given them an insight into why they’ve been struggling with social interactions, sensory issues, emotional regulation, etc… Why should we tell them to stop? Why should we try to force them into an assessment? When for many it’s not viable.

If you’re not in the UK, diagnosis can cause a huge financial burden. Even in the UK, trying to get diagnosed is a nightmare due to the waiting lists being anywhere up to five years to be seen once.

And let’s not forget that most diagnosis assessments are solely based on what others say about you and school reports, which causes issues for those who don’t have family and friends to back them up.

Self Diagnosis is required to seek a diagnosis. But saying someone needs to go through the current diagnosis channels in the NHS is abhorrent when self diagnosis only ever leads to further understanding of oneself. 

References:

[1]. New Zealand – Burdens and Borders

[2]. Canada Reform – Autistic Immigrants

[3]. Trump Administration Seeks To Bar Immigrants with Disabilities

[4]. Autism Stats – Autistic Individuals and Unemployment

[5]. NHS DNR for Autism and “Learning Disabilities”

[6]. To Siri With Love – Reader Reviews