Life is full of ups and downs. My passion in life is helping people climb back from the “downs” into “ups” that often seem impossible at the time. In order to do this, I had to go through a personal hell and walk out the other side. People often tell me how inspiring I am, which I have mixed feelings about, they also ask me how I did it.
Sometimes I worry that people think my journey was straight forward, with a well defined map that I can pass on to those lost in their own hellscape.
The truth is that it has been very much a trial and error situation, with a lot of unwise decisions, and unkind thoughts about myself.
As the title suggests, a thought I tend to have when things are bad is that I just need to “get my shit together”. Thinking like this is wildly unhelpful. Not only does it not offer any concrete advice for myself to follow, it is inherently ableist. It doesn’t take account of the myriad ways I am disabled.
Another unhelpful thing I do when I am struggling is romanticise my childhood. I wish for my days of innocence, denying the fact that my lack of childhood innocence plays a huge role in my struggles as an adult. It’s easy to convince ourselves that the past is where we belong. It’s important to live in the present, no matter what it looks like.
Self-destructing is something I do when things get really bad. It ranges from pissing off the people close to me, to a literal urge to self-destruct. Infer from that what you will. It’s easy to forget that sometimes our most toxic influence is our own mind.
Perhaps the worst thing I do is hate myself. The truth is, I’ve come a long way since “the old days”, and when I am struggling, I forget that. I am my own worst critic. I convince myself that I am a harmful influence, and a generally shitty person. If you ever catch yourself doing this, it’s okay to ask for a little validation from the people closest to you.
We all need uplifting from time to time, don’t be ashamed for struggling.
I hope that these insights into my own self-critical thoughts are helpful to someone. There are times when I forget that I am a human being, and not machine, existing solely to serve the benefit of others. It’s something many of us do, but I want you to know, it’s okay to be human.
Just don’t let the shitty thoughts rule your mind.
This article was co-authored by David Gray-Hammond and Katie Munday
Trigger warnings: This article discusses gaslighting, trauma, criminal exploitation (on various topics including sexual exploitation), substance use, mental health, cuckooing, county lines.
Due to the extensive trauma that we experience as Autistics in our formative years, many of us find ourselves seeking connections with other people. Trauma can be a very isolating experience, and naturally we desire love and support, but don’t always look for it in the right places. We often don’t even know what healthy love and support looks like, we are looking for some elusive phantom of love without any idea of what it could be. This is common place for those who have had traumatic lives; disconnected families, intergenerational trauma, all of these things remove the prospect of having a safe space in which we can grow and develop.
This creates an environment where we become susceptible to being taken advantage of by people and groups who show us the slightest bit of interest. We find ourselves in circles which are exciting, fast paced, and offer support (at a price). These groups often have clear hierarchies and expectations that on the surface appeal to Autistic people who thrive within structured environments. However there are a lot of expectations that are left unsaid.
When considering the criminal exploitation of Autistic people, we must also consider the situations that lead to them being in such a position in the first place. There is a significant overlap between Autistic people and substance users, albeit largely unacknowledged. This has a distinct relationship with the extensive trauma we have already mentioned; when the environment is incompatible with our wellbeing, we look for ways to numb the discomfort. Substances can make it easier to mask in environments where we feel unsafe, and give a sense of community by allowing us to feel like we finally fit in somewhere in society.
Due to the criminalisation of substance use in many parts of the world, drug and alcohol consumption can very easily lead to criminal activity and exploitation. Once you become a regular user of mind-altering substances, it is no longer inconceivable to do things outside of your previous ethos to continue your habit, and strengthen relationships within organised groups. Your boundaries are no longer solid, but malleable, depending on what is required of you to access the substances of your preference. This breakdown of boundaries makes it easier to be manipulated, by people you are gaslighted into believing have your best interests at heart.
The substances alter your reality, as do the people around you.
What does exploitation look like?
Exploitation can take many forms. It usually starts with a small favour between friends. The frequency and significance of the favours may increase, but the perceived balance in reciprocity isn’t what we are led to believe.
Some of us are made to do things that we are completely uncomfortable with, but feel we have no choice in. It can range from violence to sexual exploitation. It can represent an escalation in what we are doing, one minute you are smoking a joint, the next there is heroin on the table. While there is no such thing as a gateway drug, there are people who act as gateways, ushering us deeper into a world that we are no longer comfortable to be in.
Perhaps two of the best known forms of criminal exploitation in the UK are cuckooing and county lines.
This particular form of exploitation involves a criminal individual/organisation taking over an individuals place of residence. The victim is always vulnerable in some way, usually due to age, disability, and/or substance use. The criminal enterprise will then use that persons home as a base from which to perform criminal acts such as drug dealing.
County lines refers to the trade lines of criminal enterprises that cross boundaries, the name specifically refers to the phone lines used, but it is more complicated than that. Vulnerable people, usually children, often disabled, are sent up and down the country to distribute illicit goods. This is often used to settle debts between the individual and the dealer.
When considering an Autistic person who has fallen into this kind of exploitation, there are a few notable features that should be considered.
The person may suddenly be “gifted” expensive items such as new phones by their friends.
There may be a distinct change in social activity, such as suddenly spending a lot of time out of the home, socialising at odd hours.
They may be reticent to allow people into their home, especially in the case of cuckooing.
There may a change in attitudes and behaviour surrounding substance use.
Change in behaviour or inconsistent behaviour may indicate substance use.
Having a knowledge of things outside of their age/stage of development. This may be harder to define in Autistic people.
Protective factors for Autistic people
In short, this issue comes down to socioeconomics. Autistic people with adequate access to the right support are much less likely to be exploited. Most importantly, access to the Autistic community should provide a much safer and more accepting avenue to meaningful relationships. Other considerations are access to adequate housing, support with mental health and substance use, positive and affirming information on being Autistic, access to work and education, also, access to welfare benefits where required.
This is not going to end until substance use is treated as a public health issue, rather than a criminal issue. It is also important that we continue to dismantle systemic and societal bigotry such as racism, transphobia, and ableism as those who are exploited are often multiply marginalised, this is especially true for Autistic people.
This article was co-authored by David Gray-Hammond and Tanya Adkin
Trigger Warning:This article contains strong language and discussions of fabricated or induced illness, ableism, discrimination, bigotry, child abuse, medical abuse, systemic abuse, institutionalised bullying.
Fabricated or Induced Illness (FII) is defined by a set of “alerting signs”, written in guidance produced by the Royal College of Paediatrics. From the horses mouth itself-
“FII is a clinical situation in which a child is, or is very likely to be, harmed due to parent(s) behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health and neurodevelopment is impaired (or more impaired than is actually the case). FII results in physical and emotional abuse and neglect, as a result of parental actions, behaviours or beliefs and from doctors’ responses to these. The parent does not necessarily intend to deceive, and their motivations may not be initially evident.”
RCPCH Guidance, 2009 (updated 2021)
Parent blame and insinuations of FII are becoming common place, and this is where it gets interesting. Let’s talk about what isn’t FII. It isn’t Munchausen’s Syndrome by Proxy, and it isn’t Factitious Disorder Imposed Upon Another (actual mental health diagnoses). It isn’t a diagnosis, there is no diagnostic criteria, it doesn’t appear in any diagnostic manual; in fact there is no evidence to support the need for FII to even exist as a form of child abuse. Yet as advocates and professionals working with neurodivergent children and their families, this is a daily occurrence for us.
FII was created by the Royal College of Paediatrics. There own guidance states that-
Literature in this field recognises that there is a gap within the existing evidence-base surrounding the incidence and prevalence of PP [Perplexing Presentations] and FII. We acknowledge that there is a lack of data in this field, in particular for perplexing presentations, and the exact incidence and prevalence is therefore unknown.
RCPCH guidance, 2009 (Updated 2021)
This exists despite the fact that in the past eight years, there have been no deaths involving children where FII is even mentioned, except for two cases, one by heart failure (from a pre-existing condition) and one by suicide (Bilson, 2021), it’s probably a fair assumption to say that it was likely caused by a failure to accommodate the child’s needs. Had professionals spent their time investigating these children’s needs as opposed using parent blame as a way to alleviate them from their duty of care, these children may very well be alive today.
What are professionals looking for when they suspect FII?
Not all of the “alerting signs” are relevant to Autistic children, but in particular the following are quite concerning-
In the child
• Reported physical, psychological or behavioural symptoms and signs not observed independently in their reported context
• Unexplained impairment of child’s daily life, including school attendance, aids, social isolation.
RCPCH Guidance, 2009 (updated 2021)
In the parent
• Parents’ insistence on continued investigations instead of focusing on symptom alleviation when reported symptoms and signs not explained by any known medical condition in the child.
• Inappropriately seeking multiple medical opinions.
• Child repeatedly not brought to some appointments, often due to cancellations.
• Not able to accept reassurance or recommended management, and insistence on more, clinically unwarranted, investigations, referrals, continuation of, or new treatments (sometimes based on internet searches).
Not letting the child be seen on their own
• Talking for the child / child repeatedly referring or deferring to the parent.
RCPCH, 2009 (updated 2021)
If you know anything about the Autistic experience, you will know exactly why the above specifically targets Autistic children and their parents (who are often Autistic themselves). Where does this consider masking? Where is the consideration for situational mutism, Autistic burnout, extreme anxiety (often experienced by Autistic children). This is not withstanding the fact that most “professionals” have not even heard of Autistic burnout let alone have more than a generic and stereotypical understanding of Autistic people that is based on outdated and largely debunked theories.
It gets worse.
The next instalment in this shitshow of a pamphlet (that is directly responsible for the removal of scores of children from their families, and the untold trauma that comes with such things), sounds like it was directly quoted from a right-wing news channel-
Parents who struggle with the management of their child may seek an inappropriate mental health diagnostic justification in the child such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD).
Material gain includes financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.
RCPCH guidance, 2009 (updated 2021)
I bet these were the type of people who were having wine and cheese parties by accident in the middle of a pandemic.
Now, we’re not going to waste our spoons on explaining why this is utter ableist, classist, racist horseshit (really all the forms of bigotry you can think of). What we will say, is that for anyone who has filled in a DLA form, submitted the plethora of evidence needed to justify a childs disability, for what is effectively a small amount of pocket money compared to the actual cost of caring for a disabled child. Preferential parking and preferred housing? Clearly these people are so far removed from any semblance of qualification to discuss or have any impact on the lives of neurodivergent people, or disabled people in general, that they buy into the propaganda peddled that disadvantaged people are trying to steal resources.
Back to our broader discussion.
Here’s another golden nugget of guidance-
“The second motivation is based on the parent’s erroneous beliefs, extreme concern and anxiety about their child’s health (eg nutrition, allergies, treatments). This can include a mistaken belief that their child needs additional support at school and an Education Health and Care Plan (EHCP).”
RCPCH guidance, 2009 (updated 2021)
Big issue with this one. Schools are effectively financially penalised for seeking further SEN support for children. It’s common place for schools to have to fund the first £6000 of an EHCP. £6000 that doesn’t actually exist. Not withstanding the fact that school teachers are not qualified to decide whether or not a child is “fine in school”. If this was the case, why do we even require needs assessments in the first place?
Then there is the level of paperwork that is required to support a child with significant SEN, and the staff hours that takes. All of this results in schools routinely downplaying children’s needs and presentations, not knowing what they are looking for, and assuming that if little Johnny isn’t smashing up the classroom, he must be fine and there are no needs to meet.
Medical professionals are relying on these reports of “fine in school” from underqualified mainstream education professionals to then decide that it must be FII, that the parents are making it up… and the cycle continues.
So, the pièce de résistance in this spectacle-
“Autism Spectrum Disorder (ASD) in the parent may underpin fixed beliefs about the child’s ill-health.”
RCPCH guidance, 2009 (update 2021)
So there you have it people, if you are Autistic, if you seek an EHCP, if you seek specialist advice (because the NHS is woefully underfunded, and uneducated on Autistic experience), if your child masks, if you seek a private diagnosis, if you challenge professionals, if your child is situationally mute, and (finally) if you are poor. You are ticking a lot of boxes as a child abuser; as profiled by the RCPCH guidelines on Fabricated or Induced Illness.
How does this contribute to institutionalised parent/carer blame?
Institutionalised parent/carer blame was researched by Professor of Law, Luke Clements (2021). The following is a quote regarding the research report.
“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the Education Secretary to address this issue as a matter of urgency.”
Rt. Hon. Sir Edward Davey, MP, Patron of the Disability Law Service, 2021
The reports key messages were as follows-
“National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.
The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.
Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.”
Luke Clements, 2021
We can then see how the rhetoric of parent/carer blame is perpetuated. We have education, health, and social care, working symbiotically to impart accusations of FII onto parents and carers of disabled children, absolving themselves of responsibility for that child’s wellbeing.
If we were cynical, we could comment on how this has been beautifully engineered for one sole purpose; TO SAVE MONEY. If there are no needs identified, then there is no responsibility for education, health, or social care to meet those needs.
If we intimidate and gaslight parents and carers enough, they may well stop advocating for their child’s needs. Is this the social care equivalent of off-rolling? Where schools and local authorities threaten parents with social care referrals and fines if their child does not attend school, or offer them the alternative of home education, absolving them of any legal (and financial) obligations for the child’s education.
All of the above heavily contributes to Autistic suffering by using these convoluted systems to deny access to much needed support and accommodations. It’s an inside joke amongst Autistic parents and carers that they are waiting for a FII referral.
“One whiff of neuro- and they’ll have you for FII”
It’s all based in the ableist assumption that Autistic people are incompetent and incapable child-abusers. Maybe the commonly held (and debunked) theory that we don’t have empathy contributes to this?
Seeking support for your disabled child has effectively been criminalised.
What can be done about it?
Here’s the tricky part, because these accusations, and infringements on private family life grind us down. Really the only thing that we can do about it is to tick every box that’s listed as an “alerting sign”.
Request an education, health, and care needs assessment from your local authority.
Be prepared to appeal every unlawful decision.
Seek professional advocacy.
Keep all communication in written format.
Keep everything as evidence.
Get very good at filing, very quick.
If you are able to access private specialist assessment, do it.
If you are being accused of FII, consider commissioning an independent social care assessment.
Expect parent/carer blame.
Do not take it personally.
Do not give up.
We realise there is cost involved in the above advice, and it’s not cheap. Unfortunately, it’s just another fine example of how policies and systems are designed to penalise poor and disabled people. There are a few things you can do if you are on a low income though.
Learn as much as you can! The fight for your children’s right’s and your own never goes away, the sad fact is you will always be battling to get what your child needs and is legally entitled to, you just get better at it and it becomes less overwhelming over time.
Evidence– You can submit subject access requests to schools, local authorities, doctors etc. This should give you evidence of your child’s difficulties and what has been done to meet their needs.
Legal Aid – If you are a low-income family, you may be able to access legal help to appeal local authority decisions regarding EHCP’s. Legal help will also fund independent reports, usually Educational Psychology, Speech and Language and Occupational Therapy, I have known them fund independent Social Care reports before however it is not common place and you will have to put together a good argument as to why it is necessary from the perspective of an EHCP. You can access legal aid information here.
Make use of free resources – IPSEA have a range of templates for all things EHCP related and a free helpline although, it can be difficult to secure a spot. Look for free Q&A’s on Facebook. Scour the files section of face book groups.
Finally, access the Autistic community online, many of us have been down this well-trodden path before and can give some really sound advice. Many of us are professionals working within this field.
It’s not always called FII, mostly it is implied rather than explicitly said. The default position is always that there is a fault with the parent/carer. Especially if you are Autistic.
Bilson, A. (2021) Education Magazine – Episode 6 – Fabricated or Induced Illness. Sinclaires Law. YouTube.
Clements, L (2021) Institutionalising parent/carer blame. Cerebra.
Davey, E (2021) Institutionalising parent/carer blame. Cerebra.
My years of active addiction account for a lot of the suffering that myself, my friends, and my family experienced. The very fact that I am alive right now is some sort of miracle, yet to be explained by science. I remember trying to picture what recovery would look like, it was difficult to imagine.
I am the sort of Autistic person that some might reductively call a “black and white thinker”. For me, things fall into good or bad, and when I can not easily categorise things, I fall apart.
It’s no surprise then that my brain told me that once I escaped the horrors of active addiction, life would be sunshine and good times. I think, perhaps, this is a trap that many addicts fall into. Unsurprisingly, it is an inaccurate, and frankly dangerous assumption to make.
Recovery is not all positive, because life is not all positive. Truthfully, I have faced some intense suffering and struggles since achieving sobriety.
I was privileged in the support that I had around me for those times, there are a number of people without whom, I could not have remained sober up to this point.
This is where recovery gets dangerous.
If you are not privileged enough to have that support, it is easy to fall back into active addiction. Our minds constantly seek oblivion, and will use any excuse to pull the trigger. The unhappy realisation that bad stuff still happens when you are sober is one hell of a reason to pull that trigger.
This, truthfully, is why I have written this post. If you are embarking on a journey towards sobriety, you need to be prepared for the good and the bad that life brings. You need to know that when the shit hits the fan, you don’t have to throw your sobriety into the fuck-it bucket.
I have watched too many good people lose their lives in recovery. Autistic people are already disadvantaged by a system that simply does not care for our existence. It is my hope that my fellow Autistic addicts will read this and be prepared.
Sobriety is not easy. Life is not easy. I spend a lot of my time wishing I could turn down the difficulty settings on my life.
Sobriety is worth it, you are worth it. You can have a happier life, regardless of the bullshit. Your suffering is not your fault.
When life hands you lemons, squirt lemon juice in its eye; stay alive, even if it’s out of spite.
At Aucademy we often talk of a perfect Autistic homeland, affectionately dubbed Autopia. Conceptualised as a place in which all Autistics can lead peaceful and comfortable lives, it sounds like a dream come true; but what are the realities of such a place? Is such a place even possible?
This evening I was discussing such things with a good friend of mine, and one thing became clear. Accommodating Autistics does not necessarily mean all disabled people are accommodated.
Let’s use the UK supermarkets “autism hour” as an example.
In the UK, many supermarkets have an hour a week where they reduce sensory stimuli, and encourage only Autistic people to attend to their shopping in order to reduce crowds. It helps, but there is a wider conversation about only doing this for an hour a week that needs to be addressed another time. We can, however, look at why this can’t be done all the time.
Lower lighting is great for Autistics with no particular intersections of other disabilities, but what of those with conditions of the eye that make seeing in dim light difficult? In our attempt to grant privileged access to one minority, we have removed access for another minority.
This really is the crux of the issue with creating Autopia. Autistic people live at many intersections of experience, and any attempt to accommodate everyone together, will likely marginalise another minority.
A true Autopia would require an individual approach, where each person’s living environment is adapted to there individual needs. It would require a bespoke design.
This however presents an issue with shared spaces. Autistic people represent a great deal of intersections with race, gender, disability, and so forth. The creation of a truly inclusive and safe space for Autistics would require more than sensory rooms and a living situation outside of the grasp of capitalism.
The complexities of creating shared space for all Autistics, both physically, and virtually, is still something that needs to be addressed.
Minority groups from all intersections have been telling us about the bigotry they face within our online community. Non-speakers getting attacked for their use of language when they have no access to Autistic spaces, black and trans Autistics having their experiences ignored and invalidated.
These are just a couple of examples of things that need to be addressed if Autopia is to ever become reality.
Whether we care to admit it or not, the Autistic does have unwritten rules, and some in our community react poorly when newcomers do not understand the nuances of our community. This in itself creates issues of accessibility.
This is personally why I adore neuroqueer theory. Should we not live a life true to our natural selves? We need to encourage Autistics to live authentic lives, not exclude them from our spaces.
This is not to excuse the intentional perpetuation of pathology paradigm views and bigotry, but a comment on the fact that we were all raised with problematic ideas of what it is to be Autistic. Was it not access to the community that helped us change those views, and embrace the neurodiversity paradigm.
There is no “one-size-fits-all” approach to a neurocosmopolitan society. That approach is provincialist in nature, creating privilege for some while marginalising others.
On the whole, I constantly see a great deal of positive growth and evolution from the Autistic community, but like any societal movement as it reaches maturity, the Autistic rights movement has some creases that need ironing out.
Autopia is a beautiful goal to shoot for. It’s time we came together and made it a reality for all Autistics. Together we can build a neuroqueer future, and on that basis, a neurocosmopolitan society.
During my years of active addiction, I had no concept of who I was beyond being a drug and alcohol user. For this reason, I felt trapped into my substance use, unable to escape the horror that I was habitually inflicting upon myself. I finally found sobriety, but was clinging on desperately.
That’s when it happened.
A team of neurodevelopmental psychologists conducted an extensive assessment and told me I was Autistic. I will admit that to begin with I didn’t know what to make of it. Was this the reason for my suffering? Could I make the memory of my darker years disappear if it were removed?
I won’t say I am ashamed, I was suffering, but I’m not proud to admit that there was a time when I may well have taken a “cure” had it been scientifically tested and offered to me.
Then I found a community.
This community was a strange place, because I no longer felt like an outsider. The experiences they described and the feelings they expressed were like the sweetest song lyrics, gently soothing my Autistic soul. These people knew me. They were me. I was no longer adrift in the world.
That community was the Autistic community.
I was learning more and more every day. I can’t mark the exact moment when it happened, but suddenly I had a real identity. As my engagement with that community grew, so too did my sense of self.
No longer was I David the drug user. I was David the writer, David the advocate, David the activist.
Presenter, host, speaker, consultant, trainer. The list simply grew.
I saw the imperfections of the community and felt it to be a beautiful melody. They were as imperfect as me, and they did not hide it. They seemed more human to me than those who had called me an alien.
This community. This beautiful, imperfect community, had saved my life. So now my work commenced to return the favour. I looked around and realised that the suffering I had once experienced, that all of us had experienced, had nothing to do with my Autistic mind. The problem was a cruel and indifferent society.
I set out to help my neurokin, one person at a time.
Thus, a new David had emerged from the ashes of his former life. Finding the Autistic community didn’t just give me a new identity, it fundamentally altered my sense of self. It gave me purpose and focus where before there had been none.
I can never be sure of whether or not my debt to this community has been repaid. Not that I particularly care. I adore this community, and will fight for it for as long as I draw breath.
Thanks to this community, I know myself, and that is a thing that is priceless.
For quite some time now, the neurodiversity movement has spoken about the harmfulness of behavioural techniques. These techniques are used to prevent the outward indications of the Autistic neurotype. They are generally aimed at children, and almost always lead to significant harm being done.
The use of such techniques belongs to a wider issue with the way that society views neurodivergence.
What seems most obvious to me, is that the existence of words such as “neurotypical” already imply that there is a typical standard that we diverge from. Words like “typical” and “standard” can be considered the descendants of the pathology paradigm, and the ableism that came from that worldview.
Under the pathology paradigm, anything that sits outside of the box of “typical”, is broken and in need of fixing. In the case of autism, this has led to research into deficits, resulting in the direct oppression of Autistic people through the use of harmful cure culture.
This cure culture attempts to standardise the mind, hence “neurostandardisation”. It is an attempt to bring the neurodivergent individual into line with a neurocognitive standard of existence. It’s not always medical and behavioural interventions either, often it is the societal culture that forces neurotypical people to camouflage their neruodivergent traits.
The question then remains as to why society forces neurostandardisation onto people.
I am firmly of the opinion that society at large has three reasons for clinging on to the pathology paradigm, and using it to oppress and “standardise” others.
1. Those with privilege in this society are afraid that by giving others more, they will have less.
2. Keeping minority groups in an oppressed state, requiring them to “fit in” means that the privileged do not have to consider the failings of their own culture and society.
3. Those who thrive in the dominant culture are unwilling to put the effort into learning how to live equitably with minority cultures and groups.
When you consider the origins of bigotry, I start to feel like the pathology paradigm has played a huge role. Mel Baggs wrote of how most (if not all) forms of bigotry are rooted in ableism. Nick Walker writes extensively of the privilege of neurotypical autism professionals in her book Neuroqueer Heresies. One might consider that having privileged member of a dominant culture in a position of authority over a minority is a blatant conflict of interest.
Neurostandardisation can then be recognised as the forced assimilation of neurodivergent people into the dominant culture, while keeping them in a position of disadvantage. It is a tool of oppression that takes many forms, but is ultimately the goal of the pathology paradigm. A paradigm that seeks to invalidate the existence anything outside of it’s limited, reductive, and quite frankly incorrect view that such a thing as “normal” exists.
This is why the existence of advocacy is so important. Where oppression exists, we need voices that can shout loudly, and expunge the false beliefs of the current sociocultural paradigms.
Until those beliefs have been dismantled, neurodivergent people will always be lower on the ladder.
Recently I have found myself considering the direction that my advocacy is taking. I have found myself reading extensively on “autism theory” and, on the other hand, writings by actually Autistic authors.
At first I felt broken by what I had realised. Our world is built on a paradigm that by design oppresses anyone outside of it’s cultural standards of normal. What can we do about such a hate filled world? How can a minority group take on a system that is set up to silence them?
The answer is the opposite of hate. Which some might call love, but I find that utterly reductive and terribly clichéd. So if love is what drives us to stand up for another, then advocacy is the tool that we use to do so.
Where the hateful and oppressive masses sit in silent glee as all that is not “normal” is destroyed and hidden away, a self-advocating culture amplifies the voices of those who may otherwise go unheard.
Some people think that the job of an advocate is to give the oppressed a voice, but this is not true. An advocates job is to listen, and communicate what they hear in a way that can no longer be ignored.
Advocacy isn’t always about representing another person. Often as advocates we have to sit with ourselves and listen to our own inner voice. What helps us? How did we unlearn that? An advocate must be able to reflect on their own experience, and how that impacts the people they are standing up for.
The most radical thing an advocate can do, however, is to unlearn the systemic lies that society has drilled into us since birth. As Autistic advocates, the greatest lie we have been raised with is that society has a standard that we must adhere to.
There is no standard, there is no normal. This is a mistruth used to keep us static. Our society desperately wants our silence, so it fools us into thinking that we diverge from “normal”, when the truth is that what we truly diverge from is the dogma of a world that craves our indifference.
From a young age we are taught that our difference makes us broken, a shameful secret to be remedied or hidden from sight. An advocate must stand tall in the knowledge that our diversity is what makes us beautiful.
That, is what can combat a hate filled world. Not love, but advocacy that guides the world into seeing the beauty in our differences, instead of trying to eradicate them.
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:This article contains mentions of systemic mistreatment in the mental health setting, traumatisation, references to pathologizing theories and language, mention of cultural ignorance, and discussion of mental health conditions inlcuding cluster B diagnosis and misdiagnosis.
It seems to be common knowledge in the Autistic community that Cognitive Behavioural Therapy (CBT) by and large does not work for Autistic people. Lets dig a little deeper. The fundamental issue with CBT and other similar therapies is that they were designed around the predominant (or neurotypical) neurotype (Kelly and Farahar; 2021). These therapies were largely developed in the western hemisphere and therefore tend to adhere to western standards of ‘normal’. This presents the first of many issues, even before you consider the Autistic neurotype, not everyone will fit into those cultural standards.
According to NICE guidelines, CBT and related therapies should be adapted to be appropriate for Autistic individuals on a case by case basis, but the guidelines fail to discuss what these adaptations should be, based on input from Autistic individuals, and are instead somewhat generic in nature.
“Consider adapting the method of delivery of CBT for Autistic children and young people with anxiety”
NICE Guidelines (2013, updated 2021)
The guidance then goes on to offer very little meaningful advice beyond emotional recognition training and simplification of tasks. It is quite clear that the Autistic community has not been consulted on this guidance.
The above example is part of a much larger and more pertinent question; is the application of neuronormative mental health theory and therapies actually largescale gaslighting of neurodivergent individuals?
Whenever we look at supports for Autistic individuals or common “deficits” cited for those of us with that particular neurotype, a lot of it is centred around difficulties with emotional recognition, alexithymia, and our inability to mentalise another’s emotional state (Baron-Cohen et al; 1985). In fact, theory of mind posits that our inability to mentalise the psychological state of others leads to deficits in social communication and the ability to empathise. Perhaps then it is easy to see where therapies informed by this research are already beginning to fail their Autistic patients.
Psychological therapies start from the position that there is one correct way of experiencing the world, this in itself is neuronormativity. It assumes that the neurotypical experience is the standard that all should be trying to achieve. So when the Autistic patient enters the room, the therapist will first attempt to understand the Autistic person through the lens of neuronormative thinking, and then try to force the Autistic mind into a neurotypical box, and in turn apply their understanding of neurotypical mental health, onto a neurodivergent mind.
This is a fundamental problem because Autistics simply do not think and experience the world in the same way as a neurotypical. They can pretend to through masking, but as previously mentioned in this series, that comes with a great cost to wellbeing (Gray-Hammond and Adkin; 2021). How do we even know that Autistic people have the same experience of emotion? This would go some way towards explaining the difficulty Autistic people experience when trying to explain their inner world using neurotypical two-dimensional descriptors.
We are teaching children to label their feelings as happy/sad/excited, etc, when in reality, who experiences just one simple emotion at once? How many different types of happy or sad are there? Emotion is complicated, so assuming that there is a standard experience of emotion that we should all fit into (regardless of neurotype) is not only ignorant but blatantly ableist.
If we apply the theory of monotropism (Murray et al; 2005) to emotion, it becomes even clearer why standard psychological interventions are not appropriate for Autistics. Put simply, the theory of monotropism suggests that core autistic experience is related to differences in attention. It suggests that autistic people’s thinking falls into detailed “attention tunnels” in comparison to the attention of those with the predominant neurotype, whose attention is less detailed but more easily split over multiple subjects also described as polytropic thinking.
So if we’re focusing on an internal feeling or emotion, then typical language used to describe neurotypical emotion is not going to fulfil its purpose.
How many times have doctors misdiagnosed autism (especially in female presenting individuals) as Borderline Personality Disorder/ Emotionally Unstable Personality Disorder? How many times have Autistic people been prescribed medication for depression or anxiety when the problem was in fact Autistic burnout? Yet more evidence that neuronormative standards do not apply to Autistic experience.
This medical neuroprovincialism creates gaslighting. Applying neuronormative standards to Autistic people regarding emotional and mental health creates further suffering by further traumatising us, creating more masking, and in turn lowering our ability to cope and manage our mental wellbeing. Thus, we have the vicious cycle of patient-blame perpetuating itself around the premise that Autistics have an incorrect experience of the world, and that cycle makes our mental health worse more often than it improves it.
In truth, nobody experiences the colour green in the same way, at least not that can be proven. Experience of emotion is entirely subjective, two people rarely even look the same, let alone having an identical experience of their inner worlds. Solipsism tells us that we can not ever experience the world through another’s eyes or mind, yet here are the neurotypical masses telling us what we should or shouldn’t be feeling based on their own prejudiced standards of what they consider “normal”. Labelling us disordered when we can not fit into that restrictive worldview. To add insult to injury, they’re not even interested in asking us about our experience. They just push us through therapies that at best are mildly to moderately helpful, and at worst can retraumatise us.
We need to be consulted on what does and does not help us, outside of the setting of the neurotypical thought process. We need trauma-informed therapies (because we are hella traumatised by merely existing in society as it is). We need to guide our therapists on what we feel and experience by advocating for ourselves loudly and proudly, in a language that feels natural to us, instead of accommodating their lack of understanding. We need to present the idea that there is more than one way to experience feeling, and finally we need to accept that about ourselves and encourage others to do so.
Consciousness is not a one-size-fits-all. It is a dynamic and ever changing thing for the individual, and it is as unique as our DNA.
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”?. Cognition, 21(1), 37-46.
I was happy to see that Autistic Inclusive Meets have restarted the #ShowUsYourMeds campaign. Campaigns like this are essential in normalising the life-saving medication that so many of us rely on day-to-day.
Stigma surrounding the use of medication, in particular for the treatment of mental health issues, is still widely prevalent in society, with many people feeling a great deal of shame over the use of medication.
Where does this shame come from?
A good place to start is the misunderstanding between being reliant on a medication for your wellbeing, and addiction to a drug. So many people conflate supervised prescription drug use with addiction that it (quite frankly) makes me sick.
Not only does this diminish the very real and terrifying experiences that addicts face every day, but it places a moral objection towards safe prescription medication use on the patient. It’s not just laypeople that do this either. Doctors will happily label people as “drug-seekers” for asking for treatment for very real and debilitating conditions. This particular form of stigma will not change until we move away from the moral judgment of addiction and substance use as a society.
Toxic positivity is also a very real issue when it comes to med-shaming. Attitudes that suggest one should consider all the people who live with a so-called “worse” situation serve absolutely no one. Such attitudes lead to people remaining silent, and ultimately, dying. You don’t have to be grateful for your suffering. Suffering is subjective. It is impossible to judge who has it worse.
Another popular way of invalidating those who need medication is to claim that you experience the same thing, and that you just need to “push through it”. This is a common myth that is trotted out by people with little to no understanding of mental and/or chronic physical health problems. Mental health problems in particular are invalidated in this way. Completely ignoring that many of those conditions change the physical structure of the brain. You can’t just push through it. This is another good way of killing people.
Also, let’s not forget the institionalised patient-blame placed on people. Refusal to treat a person because they can not engage in the expected way is first and foremost, an act of systemic violence and oppression based on deepy ingrained ableism. This is a problem that affects neurodivergent people in particular, for whom services rarely design themselves with them in mind.
The truth is, I could list a thousand reasons why people are shamed into not taking medication, but it won’t change the truth.
Taking medication is vital for a huge number of people around the world. Denying a person access to medication, or shaming them into not taking it, is an act of aggression and violence. People literally die without their medication. Shame belongs firmly on the shoulders of the people shaming ill people into not taking their meds.
I refuse to be ashamed of my medication. It keeps me well. I would be dead without it. Yes, the side-effects have been unbearable at times, but it’s necessary for me to stay alive. I do not have the privilege of chosing not to take my meds.
Anyone out there feeling like their medication is a shameful secret; I see you, and I promise you have nothing to be ashamed of. Stay well, drink lots of water, and take your meds.
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