Listen to ADHD and Autistic Adults. Please.

CW: Ableism, suicide ideation

Yesterday was tough. Far harder than it had to be. I basically lost an entire day of “productivity” due to the combined effects of rejection sensitivity and justice sensitivity. I’ll explain why it’s important you understand how these interrelate with each other, and how damaging framing can be.

What is Rejection Sensitivity Dysphoria?

(NB: Not an “officially recognised” diagnosis but 98-99% of ADHD adults say they have it and one third say it’s the hardest thing to deal with)

Rejection sensitive dysphoria (RSD) is extreme emotional sensitivity and pain triggered by the perception that a person has been rejected or criticized by important people in their life. It may also be triggered by a sense of falling short—failing to meet their own high standards or others’ expectations.

When this emotional response is internalized (and it often is for people with RSD), it can imitate a full, major mood disorder complete with suicidal ideation. The sudden change from feeling perfectly fine to feeling intensely sad that results from RSD is often misdiagnosed as rapid cycling mood disorder.

When this emotional response is externalized, it looks like an impressive, instantaneous rage at the person or situation responsible for causing the pain.

Rejection Sensitive Dysphoria

It’s a serious part of ADHD and Autism.

Which brings us to our second social sensitivity – this one has been hell in the last few years especially.

What is Justice Sensitivity?

This is not true of all ADHD people – but definitely among people with the “inattentive” presentations of ADHD – I have found this to be extremely true. Autistic people often have this trait also.

People with ADHD have a very strong moral compass:

They hate discrimination, dishonesty, fake people and unfair situations.

They love justice, fairness, honesty, sincerity, equality and the truth.

Most people say that they value those things. However, someone with ADHD will take action and do something about an unfair situation.

3 Reasons why a sense of fairness is more visible when you have ADHD:

1.     Low Tolerance

ADDers have a low tolerance for things that aren’t in alignment with who they are. This is why they quit jobs that are boring. A non–ADHDer might be able to put their head down and work in a job they hate for 20 years. Yet, someone with ADHD can’t make themselves do that. Similarly, if a person with ADHD witnesses an event (big or small) that is seen as unfair, they will take action. Someone without ADHD might need to see or experience the same thing many times before they respond.

2.     Social Norms

People with ADHD aren’t restricted by social norms in the way other people are.  For example, they wouldn’t feel obliged to stay at a dinner party (even if the host spent hours cooking), if they weren’t compatible with the other guests. This means they will do things to seek fairness that other people wouldn’t; such as standing up for someone in class, even though it might cause them problems later with their friends.

3.     Arbitrary Rules

ADHDers don’t follow arbitrary rules; just rules that make sense to them. If there is a rule that prevents fairness, then a person with ADHD is more than happy to break it.

At an airport, imagine there are long lines at the check–in counter for coach class. Yet the business class line could be empty. Many people with ADHD would take their coach ticket and try to check–in in the business line, because it makes no logical sense to stand and wait in line. This same principle is applied to all situations that don’t seem fair.

There are downsides to fairness.

ADHDers can end up feeling completely discouraged and depressed about the world and its problems, the environment, the legal system, etc. They feel powerless to make a difference as they are only one person.

Standing up for other people, means there is less time for their own family, and this can cause hurt feelings because ‘you put everyone else before us’.

Or, they might be considered a troublemaker, too rigid or perhaps the butt of jokes. 

ADHD and an Unusual Sense of Fairness

Yesterday was a perfect storm – justice sensitivity and rejection sensitivity COMBINED

When a justice issue is related to me personally – I am caught in a hurricane – I am severely limited in control to how I respond. Social stigmatization is one of the hardest things we need to challenge with mental health conditions. ADHD and Autism especially are incredibly stigmatized. No one listens to us either.

This study came out yesterday:

MENTAL HEALTH
Most Kiwi parents of kids with autism spectrum disorder suffering 'clinical levels of psychiatric distress' - study
Most Kiwi parents of kids with autism spectrum disorder suffering ‘clinical levels of psychiatric distress’ – study

The framing here is awful. ADHD and autistic people are not a burden, we are people, we have incredibly difficult lives in a world not built for us. We’ve been told this our whole life from nearly everyone – every sector of society discriminates against ADHD and Autistic people – I’m not going to link evidence here just google “ADHD/ASD and Discrimination/Stigmatization” . Every sector of society punches down on ADHD and Autistic people. Diversity initiatives only seek to exploit us, and ignore those with the most needs all too frequently.

I thought the study might be different and maybe media had reported it wrong. Here’s the abstract from the article.

The aim of this cross-sectional study was to identify predictors of the mental health of parents of a child with autism spectrum disorder (ASD). A convenience sample of 658 parents residing in New Zealand completed an online questionnaire. Participants responded to questions probing parent and child characteristics, child ASD severity (the Autism Impact Measure: AIM), parenting stress (the Autism Parenting Stress Index: APSI), and parent mental health (the General Health Questionnaire: GHQ-28). The results indicated that the majority of the parents in our sample have reached clinical levels of psychiatric distress, in particular anxiety. Parent and child characteristics were poor predictors of parental mental health problems. Parenting stress, however, was found to be a significant predictor, also acting as a mediator variable between child ASD symptom severity and parental mental health problems. Our findings are interpreted in relation to their significance to clinical practice.

Stress and distress in New Zealand parents caring for a child with autism spectrum disorder

Notice how there’s no framing here about how it affects the kids or autistic people – no consultation about how to frame this. The article title is “Stress and distress in New Zealand parents caring for a child with autism spectrum disorder”. The journal article itself goes into a lot of detail about issues of support and care WHICH WAS THE PURPOSE OF THE ARTICLE. But the abstract and framing talk of Autism as a burden, you should expect to only be burdened having a Autistic child.

How did I react? About as well as you can imagine.


Twitter

Love seeing studies about parent strain. LOVE IT. Especially love it because one of the effects of having an ADHD child when I researched is having your parents divorce before age 11. Average was 3-6. I was 5. But lets just keep talking about how stressful it is w/o support…

Everytime an ADHD or Autistic person sees these studies who is now an adult it’s a trigger for trauma. But go off about media being ethical and shit.

All this does is REINFORCE the ableist narrative around autism or ADHD, there are fucking great parents out there who spend time educating themselves and shit – ones who know how fucking harmful it is to keep talking about “BURDENS” constantly.

Sorry my existence was hard for my parents. They chose to have me.

ADHD people have enough trauma of their own without constantly being reminded and wondering if they have been the main reason their parents divorced.

Originally tweeted by Rory 🍉🏳️‍🌈 ADHD/Autism (@roryreckons) on February 9, 2021.

Living in a world that constantly tells you that you are a burden is taxing…

Autistic and ADHD people: *exist*
The media, science, academia, workplaces, people generally: “could you not?”

Why do these neurodiverse conditions have such high rates of suicide? Massive mystery.

Motivation: 0
Spiral: avoided due to education of mechanism.

Originally tweeted by Rory 🍉🏳️‍🌈 ADHD/Autism (@roryreckons) on February 10, 2021.

Hate that this shit derails me from what I want to achieve in the day. It’s involuntary on my part – I have rejection sensitivity and justice sensitivity. Attacking a justice issue that is related to me triggers both – I don’t get a choice about responding at that point.

Originally tweeted by Rory 🍉🏳️‍🌈 ADHD/Autism (@roryreckons) on February 9, 2021.

Things were just made worse by people defending the article – especially parents of Autistic children. My reaction to this:

You’re absolutely not able to speak with authority on ADHD/Autism if you are just a parent and without. The worst harms I have are by my parents, even though they had “good intentions”. Our lives are constant discomfort, sorry you had to endure the decisions you made having kids.

Originally tweeted by Rory 🍉🏳️‍🌈 ADHD/Autism (@roryreckons) on February 9, 2021.

Then when I tried to explain how harmful it was they just talked over me and explained away their position. I’d like to state not all parents did this – there are some amazing allies and parents of Autistic and ADHD kids who understand that constantly framing the “burden” narrative actually severely undermines their mental health.

Emails to a researcher involved in the project

Subject: Thanks for reminding me this world isnt made for me.

Your research was personally harmful. No actual autistic adult input. 
You can know that this has triggered my suicide ideation quite heavily.
Shame on you.


Signed, 

An Actually Autistic Adult.

Email to Researcher

This isn’t a lie. I had not thought of suicide at all for a long time. Yesterday I started doubting the work I am doing.

They emailed back.

First email response – no idea what this was supposed to mean

Here he is, inclined not to reply:

https://roryreckons.blog/2021/01/25/adult-adhd-asd-advocacy-in-new-zealand-things-must-change/

First email back from researcher

Second email – was much clearer and “apologised” for offence caused (this isn’t an apology) – but just highlighted everything that’s wrong with research at the moment:

Hi Rory,

Just saw this.

I can’t agree more that it is important to conduct research which considers the views and experiences of people with autism, and one of our more recent efforts at AUT has focused on the experiences of adults with autism.

Likewise, the focus of this research was on parents’ experiences, which is also an important perspective.

The intent of my research was not to make you feel negative about yourself, far from it, but rather provide data that can be used to lobby the government for better support and resources for people on the spectrum.

I sincerely apologise for any offence caused.

Second email back from researcher

My reply to this:

Sorry – as you probably know justice sensitivity and rejection sensitivity are part of the condition. I cannot stop myself from speaking out here. It’s almost entirely involuntary. I know usually these errors occur out of a lack of knowledge of how stuff affects us, but that’s entirely the point.

Just caught me at a really rough time – I have been trying to fix some of the issues especially in adult care – we are known as the lost generation (Paper here: https://www.liebertpub.com/doi/full/10.1089/aut.2019.0069).

A paper like this previously came out just a few weeks ago in another country. I understand your paper says you want to increase care but the way it’s been framed in the media and the journal abstract makes it sound like Autistic people are just burdens, this is an attitude we’ve had our whole life.


We are people, we have lives – usually incredibly tough due to the way we are treated, and the adaptation mechanisms that we use to try and survive.  

Thank you for replying. I appreciate what you were trying to do, but it’s caused a significant amount of frustration and hurt even if unintentional. 


Thanks,

Rory

Final response

EDIT – 12/02/2021 – The researcher in question has been extremely kind in responding and we are hoping to meet now to discuss the issues around this and potential further research avenues – which is a good outcome from an awful exchange started on my part. I know why I acted in this way – and I can explain it, it’s not an excuse.


The work I am doing has me hopeful about changing things, even though the only person to listen at the moment is Chlöe Swarbrick (Mental Health Spokesperson for the Green Party in New Zealand).

No one really will listen to me… They won’t look and report on my research that shows massive issues with Adult ADHD care from ADHD people who feel like they are not being listened to… (I’ve yet to start doing my adult ASD research on this area but I imagine the results will be similar. I’ve reached out to what I thought might be allied news organisations only to have no response.)

When no one listens generally, it saps my motivation – but I keep going for the people who are supportive, who do listen, and who also live with these conditions. I will keep going – even though I feel like I am screaming into a void at times.

Which brings me to my point – listen to people who say stuff is harmful – if they say it’s harmful don’t do it – agree and pledge to better

I love that people just brush off our concerns constantly.
“This is harmful.”
Massive diatribes about why context is important, how it’s not fair to them.

Check yourself.

Haven’t thought about ending thing for months, but you made it come back. Well done!

I’ll be ok, I am just reminded of how impossible the task is ahead.

This lesson is true of any affected population – young people concerned about climate change, racial minorities, those with disabilities.

If someone tells you something is harmful don’t do it.

“If someone is able to show me that what I think or do is not right, I will happily change, for I seek the truth, by which no one was ever truly harmed. It is the person who continues in his self-deception and ignorance who is harmed.” – Marcus Aurelius.

Originally tweeted by Rory 🍉🏳️‍🌈 ADHD/Autism (@roryreckons) on February 9, 2021.

Maybe today – I can get back to doing what I wanted to do yesterday – and actually working to change things – words have effects. Listen.

Published by roryreckons

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

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