ADHD and Autism are going undiagnosed – barriers to treatment and self-testing

(You can read a previous blog about me and my advocacy)

I will repeat something from the above article – I was diagnosed late in life – I was diagnosed with Attention Deficit Hyper Activity Disorder (ADHD) at 29, and my Autism Spectrum Disorder (ASD – This is it’s official name but I will refer to it as Autism as some in the community have taken issue with this classification and I want this to be as inclusive as possible) was diagnosed eight years later correctly after assuming I had a comorbid anxiety disorder.

DISCLAIMER: THIS IS NOT OFFICIAL MEDICAL ADVICE – I HAVE NO RELEVANT QUALIFICATIONS IT’S PROVIDED AS IS FOR EDUCATIONAL PURPOSES ONLY.

I’m going to break down a lot of the reasons why this has happened, why it’s a concern, and how you can take some online self tests that will give you a fairly accurate idea of whether you should seek treatment. Unfortunately seeking treatment can be difficult due to the barriers – for this reason I believe that self-diagnosis is valid. I was self-diagnosed for both these conditions before seeking a formal diagnosis. Remember that these must be persistent and you believe them to affect you and prevent you from living a thriving full life.

I will provide article citations as I go through but I won’t reference in an academic style. Please note that this science has been done generally through high income Western education institutions, and I am not able to say with confidence that this will be the same for countries outside these parameters although some studies are also from these nations on specific barriers.

In order to make sure I am not talking about historical barriers to issues in ADHD and Autism treatment – I have limited the research done in this area to articles dated 2017 onwards.

These studies all have limitations but the wealth of evidence on one key point is pretty overwhelming. ADHD/Autism is still going massively undiagnosed.

(IF YOU ARE UNABLE TO ACCESS ARTICLES DUE TO THEM BEING LOCKED BEHIND A PAYWALL – PLEASE DO NOT USE SCI HUB. SCI HUB CONTAINS BILLIONS OF ACADEMIC INFORMATION THAT HAS BEEN ILLEGALLY MADE AVAILABLE TO THE PUBLIC AS THEY BELIEVE IN FREE ACCESS FOR KNOWLEDGE – BUT DON’T USE IT.)


Barriers To Entry for Attention Deficit Hyperactivity Disorder (ADHD)


Need for Education

A common theme that has kept coming up in papers is that most people do not know what having ADHD actually looks like. The literature that most educational institutes have historically used, has been outdated and relying on ADHD science from early versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) – the main psychiatric manual for diagnosis. Science on ADHD (originally added to the DSM in 1968) has vastly improved understanding within the last decade. Outdated views on ADHD are leading large numbers of people undiagnosed through lack of knowledge of the disorder – especially women, minorities, and failing to understand cultural differences.


Teachers

Teachers have shown in multiple studies [reference, 2nd reference, 3rd reference] that their knowledge of ADHD is sub-optimal, often holding onto out dated tropes like the common archetype (“hyperactive loud boy”) associated with the outdated scientific literature on the presentation of ADHD. On ADHD knowledge tests (symptoms, causes, nature, and treatment for the disorder) teachers score as low as 47.8% in some parts of the US to as high as 77.5% in Canada [reference]. This is largely consistent in the US with poor understanding of the mental health generally (28% believe they have appropriate knowledge[reference]) with only 34% acknowledging that they have the the skills[reference].

There are signs that this educational and teacher training programs are improving this knowledge, with significant variance between preservice (in training) and in-service (current teachers)[reference].


General Practitioner Doctors

One of the main barriers to getting a diagnosis can be your General Practitioner (GP). (Not sure if this is a universal term but it refers to the Doctor you would see first within the medical system – another term I have seen is Primary Care Physician (PCP)).

I don’t think I can summarise any better than the below pullquote from this mixed-method systematic review:

The main theme highlighted by this review related to the need for education on ADHD. Thirty-seven papers identified issues related to a lack of education on ADHD, representing a wide range of countries, 14 from the US, 7 from the UK, 3 from Australia, 2 from the Netherlands, 2 from South Africa, 2 from Canada, and 1 each from France, Singapore, Pakistan , Finland, Brazil, Iran and Switzerland . These papers highlighted both a lack of initial training, as well as inadequate training on ADHD. They also highlighted a lack of awareness, experience, understanding and knowledge of ADHD. Most PCPs also reported a lack of confidence about ADHD and in treating ADHD. These factors often hindered general knowledge and understanding of ADHD.

CITATION

I will have some specific results of the experiences of ADHD care in Aotearoa New Zealand from the perspective of currently diagnosed and self-diagnosed persons with ADHD – but it seems this trend is very applicable here too.

Media Representations of ADHD

In news media, film, and television ADHD presentation and understanding is awful.

News Media

All of the statements I make will be based on this comprehensive overview in this source.

Stories are constantly run to undermine or obfuscate scientific information around ADHD. They have debated it’s existence (when it has been proven in science over 50 years), created moral panics about the over-prescription of stimulants – often running stories on college students who abuse ADHD medication (which while an issue is not as large scale as it seems).

They have constructed a narrative around extreme behavioural problems, people with ADHD being ‘naughty boys’, or blamed parents for neurological conditions (especially single mothers, and working mothers).

The misrepresentation of science in news media has created exaggerated claims of the abilities of ADHD medicines, while inadequately showing the potential harms. This exaggeration of effects has lead people to engage in drug seeking behaviour.

One of the main factors in all of this has been media’s complicity in propagation of newsworthiness and the decline of scientific authority. Newsworthiness (whether something will be published) is prone to bias of those who run editorial rooms and is influenced by corporate ownership of media. Scientists are often hesitant to present their findings due to inaccurate science representation, often altering the outcomes to frame the existent media narrative. e.g. issues such as emotional regulation will be framed as “bad behaviour” implying that it’s not a neurological condition and that persons with ADHD willingly choose to participate in.

Stereotypes are a common feature of ADHD representations – and implicit biases and outdated understanding of ADHD means that they will publish stories that align with pre-existing media narrative around the condition.

There are more issues than that but news media is largely culpable in reinforcing negative stereotypes, obfuscating the science, making sensational claims, platforming experts with no relevant field experience, or highlighting studies that are still awaiting peer review that do not get published due to glaring methodology errors.

Film and Television Representation

I have yet to see a TV show that portrays what life is like living with ADHD. There’s not much research on this specific area in academic science but a few media articles have been written on problems with in representation.

Popular culture’s dated portrayal of ADHD as shorthand for ‘lazy’, ‘stupid’ or ‘deviant’ reinforces the stereotype that the condition is a problem only for criminals or naughty boys

ADHD will remain misunderstood until TV shows us characters who aren’t ‘lazy’, ‘naughty’ stereotypes

Indeed I believe this representation is one of the most harmful as this is how large portions of the general public get their information from on ADHD. In my recent survey, public understanding and perception is thought of as being extremely naive and uninformed.

This is an issue especially for women who have very little ADHD representation, and when represented generally are shown as having more of the male dominant forms of ADHD (the hyperactive rather than the inattentive subtype.) (Side note: Although not specifically stated – Rue from Euphoria (US) is a good representation of ADHD or Autism and it’s struggles in my personal opinion from my experiences).

I might come back to this topic in a later blog. Due to the lack of academic data on this I am not comfortable making more definitive statements – I do know that public understanding of ADHD is atrocious from my own experiences.

Stigmatisation of ADHD

Due to all these factors listed above people who do finally admit they are ADHD people face stigmatisation in education, workplaces, real life. People often do not disclose their ADHD status. I was very quiet about it (especially meeting new people) between 2013-2019. The stigmatisation around ADHD means that instantly you’re thought of as “less than”.

I actually can’t write too much on this topic at the moment as this is a massive trigger for lowering my self-esteem. I am proud of having ADHD, but it’s dredging up a whole list of reasons why I understand that others do not proudly share that fact. I am also in a position of privilege, meaning that I do not have to face other huge barriers in society – I can talk about my ADHD because I am in a position to do so.

This stigmatisation can cause parents to refuse diagnosis of their children and themselves, and lead to people living with manageable but extremely difficult day to day lives. Parents are some of the biggest barriers for children who have been diagnosed because of the stigma that comes with this condition. [source]

If you would like to read up on the effects of stigmatisation – this journal article on lived experience of ADHD is very comprehensive: ADHD in adulthood.

Cost and Availability of ADHD Treatments

ADHD care is expensive. It’s nearly entirely private for adults in New Zealand meaning that those with money can afford to seek an official diagnosis. The amount of ADHD specific services is not adequate – and have heard anecdotally from doctors that sometimes they do not refer as the service is overwhelmed.

Seeking a public diagnosis in New Zealand for ADHD is extremely difficult to the point of nearing on impossibility. The services are under massive strain from years of underfunding along with significant mental health impacts of living through the COVID-19 pandemic.

The quality and price of private treatment is varied. And some describe going to get diagnosed as an expensive lottery. [source]

In addition to this, even when diagnosed – no support is offered unless you pay out of your own pocket. The support network of health professionals around ADHD treatment (specifically in adults) is haphazardly organised. No specific treatment plans or counselling support is offered to adults unless they pay significant costs to treat the underlying damage from living with the condition undiagnosed.

Barriers summation and Autism similarities

There are many significant reasons why ADHD is not recognised. I have listed what I believe to be the main reasons above, if you read linked articles you can find more. These all contribute to lacking an understanding to seek a diagnosis or preventing you from getting a diagnosis.

With Autism almost all the same barriers occur – the prevalence of bad science, male-ness of the initial criteria, poor understanding of masking behaviour (masking is the act of limiting natural behaviour to conform to a “normal” society), unaffordable support services, doctor hesitancy to refer to diagnosis etc… (I will do a blog soon but I want to talk about self diagnosis and I have limited time).

Self diagnosis of ADHD/Autism

DISCLAIMER: THIS IS NOT OFFICIAL MEDICAL ADVICE – I HAVE NO RELEVANT QUALIFICATIONS IT’S PROVIDED AS IS FOR EDUCATIONAL PURPOSES ONLY.

Self diagnosis has been a huge area of interest in modern academic science. As education and understanding improves; more people realise that the troubles that they have been having which have been labelled as something such as anxiety or depression may have another underlying cause. It’s an important note that official diagnosis is important – but due to barriers like the ones listed above people can not get an official formal diagnosis. I self diagnosed both of my conditions before the medical profession, and these diagnoses were confirmed. Remember that these behaviours must be frequent in day to day life.

Below I will offer some tools that have high statistical validity and reliability when performing self-tests for ADHD and Autism. These have limitations, but if you score highly on these tests it might be worth pursuing a formal diagnosis if you have the means to.

Self Diagnosing ADHD (Two Tools)

The higher your score on these tests, the more likely you have ADHD.

The Adult Attention‐Deficit/Hyperactivity Disorder (ADHD) Self‐Report Scale (ASRS):

Available Online here

The Wender Utah Rating Scale (WURS) again this is a modified version – they have removed the irrelevant questions:

A slightly modified version here – available Online here

Science to back the validity and reliability of self-diagnosis in ADHD:
https://onlinelibrary.wiley.com/doi/full/10.1002/brb3.1605
https://academic.oup.com/fampra/article/35/3/336/4645208

Self Diagnosing Autism

Autism is a lot more complicated. I didn’t feel comfortable self-identifying with the label until I got an official diagnosis. I still believe that self-diagnosis is valid but the science here is not as clear as the ADHD tests. Things like high IQ also can muddy these results. PLEASE NOTE: NO SPECIFIC SCIENCE EXISTS FOR THE IDR-ASDT. I don’t know how it’s different. The RBQ-2A is good at diagnosing but this is uncertain to me, this was the test I used before seeking a formal diagnosis.

The IDRlabs Autism Test (IDR-ASDT) based on the RBQ-2A:

Available Online here

Science for the RBQ-2A Test (again I do not know the significant differences between the IDR-ASDT and RBQ-2A):
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0242-4?optIn=true

Where to from here? Positive signs

The European Network Adult ADHD put out a consensus statement on diagnosis and treatment of Adult ADHD – it’s an amazing document with incredible recommendations, and shows the frustrations of issues within this space – I’d recommend reading the whole thing. EDIT: fixed this to updated version from 2019.

https://www.cambridge.org/core/journals/european-psychiatry/article/updated-european-consensus-statement-on-diagnosis-and-treatment-of-adult-adhd/707E2A36539213CF85EACCA576F47427

What did diagnosis feel like for me ?

Hrm… My ADHD diagnosis was first (it took a further 8 years to correctly identify my comorbid Autism).

I will cover the feelings of being diagnosed in more depth later as there’s a lot of research in this area that I want to discuss. Relief was the first feeling. I suddenly felt validated. I felt seen, I felt like my struggles had a name. Then came a whole heap of other complicated emotions.

My Autism diagnosis was made on Monday of this week (25th January, 2021). Again relief, but also now I know why things happen and I know what to do to resolve stuff. I’ve been researching Autism for a short time, but understanding and living with this condition is so much easier now I KNOW why I am feeling things suddenly.

To give an example of ADHD and Autism in real life this situation occurred this week.

I had plans to go to the dentist – for a routine clean. I believed my wife was doing other tasks during my appointment and then we would be going straight home. Thanks to my ADHD inattentiveness I didn’t hear her tell me we needed to go several places afterwards. She told me when I got back in the car we needed to go to several more places. Instantly anxiety filled me, I started needing to stim, I thought the plan was to go straight home and now we were going places and I was just filled with anxiety. Then I remembered that this is a symptom of Autism – as described here. I then knew that I needed to indulge my stimming behaviour to release anxiety… AND IT WORKED. No lorazepam (anti-anxiety medication) needed. When I can explain the cause of my feelings it allows me counter the massive emotional dysregulation that comes with both ADHD and Autism.


Anyway – if you really want to help people with Autism.

Protest Sia’s ableist movie ‘Music’ – deplatform it by contacting platforms to say you don’t like the glorification of massively inaccurate and harmful portrayals of stereotyped Autism. Also it includes promoting a technique of restraint that has got people killed, and is causing significant amounts of trauma in those who have survived being restrained. This movie will do immeasurable harm to the Autism community and it shouldn’t be given the light of day.

Here’s an article on it:
https://www.bitchmedia.org/article/sia-film-music-ableism-autistic-representation-film

Published by roryreckons

I am an independent ADHD/Autism advocate and researcher. I am also diagnosed with both. I am training in 2021 to become an ICF Accredited ADHD coach. I write mainly about ADHD/Autism issues, but will also discuss morality, abolition, and current affairs occasionally.

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