A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person) by Dr Chloe Farahar

Dr Chloe Farahar was invited to write a guest article for University College London, Unit for Stigma Research blog, titled: A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person).

“Question: Is identifying with social groups beneficial to people’s health and wellbeing? Whilst marking undergrad essays on this question back in 2020 – my mind began to wander, as it is prone to do, to Autistic things. Although my PhD was in the field of social psychology – where I attempted to reduce mental health stigma with the neurodiversity narrative – I had become so engrossed in my little sliver of the field I forgot about other social psychological theories and approaches. I researched the references my students were citing and made a short Twitter thread of my thoughts regarding the psychologically important difference between being a “person with autism” and an Autistic person. The difference between belonging to a stigmatised group, and the social cure properties of strongly identifying with an Autistic identity…” continue reading HERE.

View the video that accompanies the invited article for University College London HERE or below.

Ableism in Academia – Dr. Chloe Farahar & Annette Foster

Dr. Chloe Farahar and Annette Foster joined Meghan Ashburn of Not an Autism Mom to talk about their chapter in the newly released: Lived Experiences of Ableism in Academia: Strategies for Inclusion in Higher Education

They shared their own experiences as Autistic academics as discussed in their chapter #AutisticsInAcademia about what accommodations they found helpful, and how universities can be more accessible.

Catch up with the session here:

The Proud Retard – Written by Daryl Sookun

TRIGGER WARNINGS: bullying; victimisation; use of the word “retard”; strong language/swear words

Let us go to the truth that meets so much denial,
And let us see it clearer.
That if music be the food of love,
Then let awkwardness be its killer.
Since it only takes an awkward stutter,
To diminish what could be a happily ever after.

Through the marginalisation of misaligned misfits,
There are labelled loners,
Who carry the weight of their conditions as crucifixes,
In a secluded society for normal people.
Weirdness is the nail that sticks out of a wooden board.
Every social interaction,
Feels like persecution.
Being livestock for laughter,
And rebuffed by every single lover.
To be greeted with slaps and punches in the face,
Finished with the reminder of being a parent’s disgrace.
To receive a kick up the arse for every tear that falls from the eye,
And to be told that for people like them, happiness is a lie.

There is a dark side to what we call the ‘universal language’,
A side where a smile becomes a dirty look.
Greeted by rejection in every corner of the earth,
With isolation, suffering, pain and longing.
Not alien to the Aborigines,
Or strange to the Japanese.
People of the world would laugh and stare and wonder ‘how odd’,
For this thing of man to have ever been a creation of god.
That is the language that crosses boarders,
For the people with mental disorders.
There are a million linguistic ways to say, ‘I love you’.
And thrice a million to say, ‘fuck you’,
And goodbye.
For you should not be seen by the eye.
Since your existence is a rare mistake of nature,
And therefore, you must die!

Yet to know the truth, one’s denial must shift,
Because this ‘disorder’ is truly a gift.
A gift possessed by those whose sanity is drowned by madness,
And exist in this neurotypical world of sadness.

They are different,
But still like all of us,
Tramps who are born to run,
Through the daily ditches of normality.
But their gifts will one day bring them to tranquillity.
Even if they can’t run,
They are still born and exist day by day,
And can still say ‘FUCK YOU’ in their own way:

They are part of the world and deserve to live in it.
Because it is they who contribute to the Earth’s orbit.
And the writing of history,
And the composing of symphonies,
And discoveries,
That enlighten the Swedish academy.

Here’s to the Nowhere man,
Who reached out to the Nowhere people.
And imagined a world without a heaven,
Because heaven is for the normal.
If all the neurotypicals went to heaven,
The world would be a better place.
A world of peace can only ever be imagined,
In the minds of the people who are called ‘abnormal’.

People of the neurotypical world,
I’m also an ‘abnormal’ man.
So, this is my testimony.
They don’t need you, but you need them,
More than you will probably ever know.
So, let go,
Of your fuelled hatred.
For the people who you don’t understand.
Because for every ignorant person who will be on guard,
There will always be a proud retard.

Daryl Sookun Bio:

Daryl (he/him) is a twenty-two-year-old Autistic writer who has recently finished studying at The University of Kent. The past six years have been the most challenging and traumatic years of his life. Daryl has been a victim of bullying, harassment and discrimination, and has had to endure failed relationships. Yet after having received an autism diagnosis during his studies at Kent, Daryl now has an answer to all the traumatic experiences that he has endured. Now, Daryl wishes to rebuild his damaged life and move forward from his traumatic past and live as a writer to narrate the Autistic experience and be an activist for the Autistic community.

Rebuilding my life after receiving my diagnosis: Autistic writer Daryl educates Chloe and Annette 03.07.2021


Ableism: A “type of discrimination in which able-bodied individuals are viewed as normal and superior to those with a disability, resulting in prejudice toward the latter.”

Autistic experience/to be Autistic: “[A] neurodevelopmental difference, where Autistic brains work differently to non-autistic people. ​There are as many different brains and ways of experiencing the world as there are different bodies. ​ There is a variety of Autistic people, just as there is a variety of non-autistic people, but all Autistic people share some similarities. ​ These similarities include: ​

  • differences in experience of the sensory world, ​
  • differences in communication, ​
  • differences in thinking, socialising and moving​

Some Autistic people need support with day-to-day living, and within this perspective there is no one way to be Autistic. (Autistic Self Advocacy Network, 2020)

Autistic culture: “Autistic culture largely works from a shared understanding of the neurodiversity paradigm, where Autistic experience is a natural variation within the human species, enacted upon by social power relations and ideological notions of “normal” (Farahar and Bishopp-Ford, 2020; Walker, 2014). Where Autistic experience is in need of acceptance and societal accommodation and support, not intervention or “cure”… This shared, depathologised meaning is in turn transmitted to other Autistics via “the culture we produce [such as our writing, art, and music]” (Straus, 2013, p. 466).” – Farahar (Handbook of Critical Autism Studies, forthcoming 2022)

Culture: The ideas, customs, and social behaviour of a particular people or society (Oxford University Press, 2020).

Culture of autism: The pathological and paradigmatic narrative that constructs “autism” as a medical neurodevelopmental “disorder”, embedded within a “culture of autism”.  Within this culture “people with autism” are portrayed negatively as people with deficits, and this is transmitted in similar ways to other cultures, via writings, symbols (e.g., the puzzle piece), art, language use and so on.

Discovery versus diagnosis: Discovery is preferable as diagnosis implies medical disorder or disease, which is unsubstantiated in the literature, as well as going against the narrative of the neurodiversity narrative, paradigm, and movement (Walker, 2014) of difference not deficient.

Neurodiversity: The diversity of brain and body-minds.  Neurodiversity, a property of groups, contains neurotypical people who learn and perform neuro-normativity.  It also contains neurodivergent people who queer their body-minds in distortion of neuro-normativity.

shareable meme, gold background, with lots of circles around a central circle that says neurodiversity.  The circles contain: Neurotypical; Autistic; Attention Differences (ADHD/ADD); Dyslexic; Dyspraxic; Tourette’s; Obsessive Compulsions; Anxiety; Depression; Trauma Response/s; Voice-hearing.  Black writing underneath says: Neurodiversity, the property of groups, contains neurotypical people who learn & perform neuronormativity.  It also contains neurodivergent people who queer their body-minds in distortion of neuronormativity.

Neurodivergent(ence): Individual body-minds that function in ways that diverge from ideals of neurotypicality (Walker, 2014).

Neurominority: Group who share the same divergence (e.g., Autistic; dyslexic; voice-hearer; etc.).

Neuromajority: Those whose behaviours and ways of being are deemed socially acceptable, and who are able to perform neuronormativity.  Comprises those who are considered neurotypical.

Neuro-normativity: The body-minds/behaviours/neurologies/brains that are valued as normal in society – deemed socially acceptable.

To neuro-queer/be neuroqueer: To distort the performance of neuronormativity.

Neuro-typical(ilty): The condition from which neuro-divergent people diverge from neuro-normativity. 

Shareable meme, Navy blue background, white writing, gold neurodiversity symbol: white writing says: Neurodiversity = the diversity of brains, and body-minds. A property of groups.  Neuro-divergent(ence) = individual body-minds that function in ways that diverge from ideals of neuro-typicality.  Neuro-typical(ilty) = the condition from which neuro-divergent people diverge from neuro-normativity.  Neuro-minority = group who share the same divergence (e.g., Autistic; dyslexic; voice-hearer; etc.).  To neuro-queer or be neuro-queer = to distort the performance of neuro-normativity. Definitions of neurodiversity - Aucademy in discussion

Pathology/pathologising: Regard or treat as psychologically abnormal.  To represent (something) as a disease. A departure or deviation from a normal condition.

Stigma: A process of negative labelling; stereotyping; prejudicial attitudes; and discriminatory behaviours about and toward groups of people with socially deemed undesirable characteristics.

Autistic Self Advocacy Network. (2020). About Autism. Retrieved from ASAN: Autistic Self Advocacy Network: https://autisticadvocacy.org/about-asan/about-autism/

Farahar, C. (2022). Autistic identity, culture, community, and space for wellbeing. In S. Ryan, & D. Milton (Eds.), Routledge Handbook of Critical Autism Studies. Routledge.

Farahar, C., & Foster, A. (2021). #AutisticsInAcademia. In N. Brown (Ed.), Lived experiences of ableism in academia: Strategies for inclusion in higher education. Bristol, UK: Policy Press.

Oxford University Press. (2020). Culture. Retrieved July 2020, from Lexico: https://www.lexico.com/definition/culture

Straus, J. N. (2013). Autism as culture. The Disability Studies Reader4, 460-484.

Walker, N. (2014, September 27). Neurodiversity: Some Basic Terms & Definitions. Retrieved October 9, 2016, from Nick Walker’s Notes on Neurodiversity, Autism, and Cognitive Liberty: http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

The Autistic Mental Health and Wellbeing Conference 1st – 2nd May 2021

[Image description: Dark blue text box with white and orange text. Text reads: ‘Autistic Mental Health and Wellbeing 1-2 May 2021 An Autistic-led online conference’ Illustration of a monarch butterfly. Half of the butterfly is shown in black and white, half in colour. A gold infinity sign lies across the butterfly’s thorax. On a dark blue text box at the top Reframing Autism and Aucademy’s logos appear.]

Aucademy are very pleased to be co-hosting an Autistic mental health event in 2021 with Reframing Autism, and one of our valued contributors David Gray-Hammond of Emergent Divergence. Donation tickets to be released early 2021. Pop this in your calendars!

“We are so excited to bring you this event in May 2021, a collaboration with Autistic-led educational organisation Aucademy. Held online over two days, the Autistic Mental Health and Wellbeing Conference will offer a wealth of expertise and lived experience from a diverse group of advocates.

Event description

Reframing Autism and Aucademy are delighted to co-host a one-off, online conference focusing on the mental health and wellbeing of Autistic people.

The following Autistic advocates will present their experience and expertise on the topics of Autistic mental illness, masking, Autistic burnout, wellbeing, and resilience:

  • Tim Chan
  • Bobbi Elman (Bobbi Elman: NeuroDivergent Autism Support)
  • Dr Chloe Farahar (Aucademy)
  • David Gray-Hammond (Emergent Divergence)
  • Christa Holmans (Neurodivergent Rebel)
  • Yenn Purkis (Yenn Purkis Neurodiversity page)
  • Kieran Rose (The Autistic Advocate)
  • Harry Thompson (Harry Thompson – PDA Extraordinaire)

There will also be a live panel discussion, held on Saturday 1 May at 20:00 GMT, exploring the factors contributing to Autistic trauma. The panel, chaired by Harry Thompson, will include:

  • Chris Bonnello (Autistic Not Weird)
  • Emma Dalmayne (Autistic Inclusive Meets, Autism Inclusivity)
  • JayJay Mudridge (Not Another Autistic Advocate)
  • Tigger Pritchard (The Autistic Coffee Shop with Tigger Pritchard)

Many of the presentations will put forward protective strategies for Autistic wellbeing and resilience, and all the presenters will aim to end their presentations on a hopeful note.

The overall aim of the event is to offer insights from lived experience into a range of co-occurring mental health conditions and wellbeing issues affecting Autistic people and to reduce stigma around mental illness.

The event will be delivered via a closed Facebook group throughout the weekend of 1–2 May 2021.

We are hoping to raise enough in ticket sales to compensate our Autistic presenters sufficiently. We are offering set-price tickets and donation tickets, so as to make the event accessible and affordable for all attendees.

Trigger warnings: Mental illness, trauma

About Aucademy

Founded by Dr Chloe Farahar, Aucademy offers Autistic academics, researchers, teachers, speakers, trainers, and advocates education on Autistic experience for Autistic and non-autistic learners, because the best way to learn about Autism is from Autistic educators.

About the presenters

Chris Bonnello is an Autistic special needs tutor, formerly a primary school teacher. Since 2015, he has become an international speaker on Autism issues. He shares his insights on his blog autisticnotweird.com, which has had more than 2.5 million hits, and with a Facebook community of over 135,000 followers. He is also the author of the Underdogs novels.

Tim Chan is a 25-year-old Chinese Australian. Diagnosed with Autism at 3 years old, Tim has been non-speaking after 14 months of age. He picked up Partner Assisted Communication at age 9 and has used this as his preferred method to “talk”, connect with people and engage with the world. Tim gave a TEDx talk at 18, presumably the first by a non-speaking Autistic person, and published his autobiography Back from the Brink in 2019. Facing discrimination and exclusion at high school, Tim has become passionate about social justice and works with advocacy organisations including The I CAN Network, Youth Disability Advocacy Services and Children and Young Adults with Disability and is a director of Reframing Autism. Defying early gloomy prognosis for his future, Tim is currently completing a Bachelor of Arts majoring in sociology.

Emma Dalmayne is an Autistic mother to Autistic children, and the founder and CEO of not-for-profit organisation Autistic Inclusive Meets. She campaigns strongly for Autistic rights and fights to stop Autistic mistreatment, having worked with the police, the BBC and other prominent media. Emma has written two books about Autism, It’s An Autism Thing… I’ll Help You Understand It and Susie Spins.

Bobbi Elman was born in the US and moved to the UK over 27 years ago now. She is happily married and a parent to two amazing young people. Bobbi has worked for more than 8 years in a primary school as an Autism-specific one-to-one TA and completed a postgrad degree in Autism from the University of Birmingham. Now working for herself, Bobbi trains staff in primary schools, organisations, charities, etc., as well as online workshops and presentations. Bobbi only recently discovered her Autistic identity and has happily embraced it.

Dr Chloe Farahar: late diagnosed, perpetually, enduringly, eternally, weird, odd, standoffish, but also beautifully, irredeemably Autistic. Dr Farahar is an Autistic academic whose research interests revolve around her Autistic specialisations (not “special interests”). Her specialisations include: reducing mental health stigma with a neurodiversity script Stigmaphrenia© (Farahar, 2012); supporting Autistic people with her co-founded So, You’re Autistic? post-diagnostic support programme; reimagining the spectrum as a three-dimensional Autistic space; and educating both Autistic and non-autistic learners about Autistic experience in her training courses and on her educative platform, Aucademy.

David Gray-Hammond is an Autistic addiction and mental health advocate. He is in recovery from addiction and psychosis. David is Chief Operating Officer of NeuroClastic and runs the Facebook page and blog Emergent Divergence. He has published numerous articles on the topic of addiction, mental health, and asexuality amongst Autistics and has also spoken on the topics of addiction and mental health. David has also been involved in the commissioning of substance addiction services in his home city, and has consulted in city Council meetings on addiction treatment policy to represent the treatment rights of Autistic addicts.

Christa Holmans is an Autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. Holmans is also known as the pioneer of the #askingautistics hashtag, which connects neurodivergent people who would not otherwise have a reason to engage with each other, and fosters collective understanding of Autism. Christa currently lives in an RV with their best friend and four dogs, pursuing new interests wherever they can be found.

JayJay Mudridge is an Autistic advocate, hobbyist, crossfit athlete, multiply published poet, and academic tutor existing in and around Massachusetts, USA. They run the page Not Another Autistic Advocate on Facebook where they attempt to dispel cultural myths about Autism and Autists.

Tigger Pritchard is an Autistic advocate, trainer and consultant. Tigger has devoted the past thirty years to working with neurodivergent individuals in many capacities. He consults to individuals, families and organisations, sharing his extensive skills, knowledge and lived experience. Tigger is the longest-serving Makaton (keyword sign) tutor in the United Kingdom. He’s also involved with the National Autistic Society in the county of Cornwall. And he runs the Facebook page The Autistic Coffee Shop with Tigger Pritchard, as well as an Instagram account and YouTube channel.

Yenn Purkis is an Autistic and non-binary advocate, presenter and author and co-author of 10 books. Yenn has been a trailblazer in Autistic self-advocacy, with their work in this area beginning in 2005. They are prolific, producing memes, blogs, videos, and undertaking many speaking engagements, including a TEDx Canberra talk in 2013. Yenn has won several prestigious community leadership awards over the years, including the winner of an Achievement in Inclusion award at the 2019 ACT Chief Minister’s Inclusion Awards and ACT Volunteer of the Year in 2016.

Kieran Rose is a published author and international public speaker, whose essays at theautisticadvocate.com have been read by over 1.5 million people.

With a background in SEND Education and service delivery for children and adults, Kieran delivers his own specialist Autism and Neurodiversity training to families and professionals; and provides private consultancy for charities and organisations across the world.

He is founder of The Autistic Cooperative, an international network and lobbying group for Autistic professionals and advocates; Managing Director of the social enterprise Infinite Autism, which supports Autistic people and families in the North East of England; he is advisory board member of the US-based international Occupational Therapy and Speech and Language Education organisation Therapist Neurodiversity Collective; and is Neurodivergence Educator for the US-based Occupational Therapy charity the Star Institute for Sensory Processing.

Alongside consulting on various research papers, Kieran is co-producing his own research into different areas including Autistic masking, victimisation; and monotropism and Autistic identity with his research partner, Developmental Psychologist Dr Amy Pearson; he has a co-produced published paper on Autistic masking with Dr Pearson; and another one on masking in the publication process with Dr Louise Chapman. Kieran is also a published research partner with the Institute of Leadership and Management on the experiences of Neurodivergent people in employment. He has lectured at universities across the UK and is also a PHD supervisor for Durham University.

Kieran was diagnosed as Autistic in 2003 and is parent to three children, two of whom are diagnosed Autistic.

Harry Thompson was born in Edgeware and grew up in Barnet (North London). He is currently based in London, UK and is an avid reader and researcher. He launched his YouTube channel in March of 2017 which has since amassed a strong following.

Harry began to write the first draft of his book in 2015. After connecting with many Autistic and PDA families, he pivoted his direction and completed his book in about 6 weeks, a memoir entitled The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum.

Harry has been elected to a Fellowship of the Royal Society of Arts (FRSA) in recognition of his work in the field of PDA, and also in recognition of the publication of his book, The PDA Paradox, which has been deemed an outstanding contribution to our knowledge about PDA.

Tigger Tuesdays – video shorts

Tigger Pritchard, who produces video shorts called “Coffee with Tigger”, is kindly, lushly, gorgeously sharing his video shorts with Aucademy for Tigger Tuesdays.

Tigger’s video shorts look at the amazing Autistic world, with guests, reviews, tips, ideas and advice. From The Autism Coffee Shop with Tigger Pritchard, Facebook page, Podcasts and more. Hosted by Tigger, a passionate Autistic advocate, consultant and trainer.

So grab a cup of coffee and head to Tigger Tuesday videos for snippets of insight into being Autistic, and discovering this later in life.

Language for the bin (& what to use instead)!

Picture of words for the bin and words to use instead. Written as text further down the page.

Chloe’s short video on the importance of language – focusing on the identity first preference of Autistic people
In the binKeep, practice, and role model
Person with autism
On the spectrum

Mental illness
Low functioning
High functioning
Severe/mild autism
Risk of autism

Special interests
Autistic person

Neurodevelopmental difference

Challenged by e.g. the environment

Anxious; distressed; meltdown

Support need/s – and be specific

Experience/s; expression/s

(JUST AVOID) Improve wellbeing (not change autism)
Feelings/emotions – inner world


How do I Get my Child to…X?

Saturday 15th August 2020 – by Harry Thompson

It is no secret to my listeners, readers and friends that in my experience in working with PDA families, I have come to loathe one, simple question: “How do I get my child to X?” Now on the surface, this question may seem harmless and reasonable, but let me explain to you why I find it so bothersome, and why it could potentially be damaging.

PDA (which stands for “Pathological (horrible word)” Demand Avoidance is understood by most as an ‘anxiety-driven need to be in control’. A demand represents the venom which drips from the fangs of a viper. A demand is a dangerous agent that poses a direct threat to a PDA person’s sense of freedom – our most essential nutrient. When you are PDA, feeling free or in control takes precedence over anything else. If control or freedom are lost, the PDA person will resort to most anything to regain it. I describe the PDA person’s relationship to control and freedom as being comparable to that of a mother and her child, in the sense that it is maternal. Losing control can feel like losing something you need to protect and keep an eye on at all times.

 Asking the question “How do I get my child to X?” isn’t only indicative of the parent consciously or unconsciously trying to seize control from the child, but it also illustrates that there is an emotional and psychological gulf between the parent and their PDA child. Being PDA means that in order to cooperate with a person, we have to be on the same level as them. It is for this reason that establishing a rapport and presenting oneself as the child’s equal must be the go-to approach. Any attempts by an adult – the parent or teacher, et cetera – to impose upon the child an instruction, or authority in general, will be met with resistance. The PDA child is unable to cooperate with a person who has not yet earnt their trust. Furthermore, the idea of fixed roles – teacher, doctor, and even parent – can be perplexing. If an authority figure presents themselves as the child’s superior and keeps their role at the fore, this in effect conceals a person’s humanness. Who could possibly comply with a non-human presenting itself as your superior who wishes to steal your life-force?

 I also find the question “How do I get my child to do X?” problematic in the sense that it suggests there is little or no interest on the part of the parent in accessing or learning more about their PDA child’s world – which would be a preliminary stage in meeting the child on their level. This is an example of invalidating the child’s experience. The PDA child intuitively knows who is or isn’t on their level. It is my personal belief that this in part marks the inception of the positive or negative PDA social obsession – which is, for the record, part of the diagnostic criteria.

 For example, when I meet a new person, I instinctively start trying to work out whether or not there can be harmony between us. I am on the lookout for absentmindedness, limited capacity to understand autism, PDA and neurodiversity, and self-centredness. If either of these things exist, I am on high alert. I know I have to be on the same level as people in order to cooperate with them or form relationships with them, so if there exists an unbridgeable gulf between myself and another, I either want to find quick and efficient ways of reconciling my world with theirs, clown around and be silly, or just stay away completely.

 Despite everything I have said thus far, I am aware that sometimes parents phrase a question in such a way due to it being, say, a non-negotiable. Even still, there are alternatives to asking, “How do I get my child to X?” I often encourage parents to become entrepreneurial – to see themselves as selling a product. As opposed to being dictatorial – ordering their child to do something. My PDA law is inspiration over instruction – you cannot push us into anything, but we can be lured in.

 If a parent can neutrally convey or demonstrate the intrinsic value of an activity, ritual or practise, and so long as we are aware that doing something will not lead to loss of control or diminishing returns, there isn’t a reason why the thing can’t be done. Reciprocity isn’t only important in personal relationships; it’s also important when it comes to a PDA person’s activities too. If taking a step forward means that control is lost and no benefit reaped, then the activity itself is flawed and inherently demanding. When it comes to PDA, there has to be a compelling ‘what’s in it for me?’ factor. I always say that I don’t write books or blogs, I don’t give talks and I don’t make YouTube videos. I BECOME the article I am writing. I BECOME the talk I am giving, and I BECOME the YouTube video I am recording. I don’t DO anything – if I am doing something, this implies separation between myself and the thing I intend to do, leaving room for a demand to wiggle its way in. If I become the physical embodiment of the thing I intend to do, there is no separation, and thus the thing becomes possible, not because I do it but because I become it. This process can partly be described as a flow state – becoming so immersed in an activity that you become one with it.

It is important to note that this is not the same as offering a reward – reward and punishment systems never works for PDA, as remaining in control is the greatest reward of all. Rewards set and defined by parents for good behaviour are forms of extrinsic motivation, whereas a PDA child being drawn to something on the basis they have ascertained the thing’s intrinsic value is a form of intrinsic motivation – the only way a PDA child CAN be motivated.

 Instead of asking “how do I get my child to X?” perhaps some better questions would be “is X really that important?” “What is the true meaning of why we do X?” “Why does my child avoid X?” “What could it be about X that my child finds so unsafe?” These questions are less anxiety-provoking for me because they succeed in challenging the notion of X, and at no point does the child’s experience get invalidated, because there is a genuine desire to understand the child’s world, and not just an attempt to get them to comply.

A rightly angry Autistic blog

Friday 7th August 2020 – by Victoria Busuttil

Today I feel deep seated, unadulterated, rage and anger.

I’m sat here drinking tea, freshly poured out of my favourite tea pot. I politely dunk my Rich Tea biscuits. Feel sorry for the dog and give her an occasional biscuit. I love the sound she makes when she crunches, it is quite stimmy and I like it. 

I digress – f**king hell, I can’t even rage conventionally.

I’m a bit of a novice at expressing rage and anger, as you can probably gather.

Why am I angry, I hear you ask?                                                                            

Actually, I don’t care if you don’t ask because I’m going to tell you in my own inimitable style. If I were you, I wouldn’t ask because it’s going to be one hell of a s**t storm rant.  Put those ear defenders on.  Scroll on by because I f**king well wish I could do that with my life at the moment.

 I am angry with the system.

I am angry at being misunderstood, not heard, expected to communicate verbally when I am bordering on non-speaking due to overload.

Last April I was struggling with mood swings and suicidal ideation. I had spent 6 months withdrawing off a medication. I’d relocated from the South East of England to the North East coast. I was struggling. I wasn’t depressed -I was overwhelmed. I was scared by these sudden intense and intrusive thoughts. I couldn’t understand what was happening.  I was in a place where I felt safe and life was ok.

 I had been on the same anti-depressants for the last 15-20 years. I was told that the drug was no longer working as the dose had been increased to its maximum. I know now that no drug would ever have worked – I wasn’t depressed. I was experiencing extreme burnout.

The GP prescribed a different drug. He said it was a newer, more effective drug, less side effects. I believed him, took the prescription. What he didn’t tell me was that this drug is notoriously difficult to stop taking and subsequent withdrawal effects can be horrendous. When I am in a state of burnout or overwhelm, I will comply with GP’s and other professionals, just to escape. I should have researched the drug before I gradually tapered off the previous medication and introduced this current one.  To be fair, I wasn’t in a fit state to research anything.

Ironically, the GP lectured me on how taking medication wasn’t a long-term option.

I stabilised for a couple of months, but my mood began to slump again. I could never see the same GP, so different doctors just kept increasing the dose. Finally, a lovely doctor took on my case but to be honest it was too late. We tried to access mental health services, but I was refused.

I gave up on life being any different, there was no alternative.

A couple of months ago I received a date for a second social care assessment (10 months waiting). The assessor was helping out the learning disabilities team I’d been referred to (my LA don’t know what to do with Autistic adults who do not have learning differences). He actually listened to me. He understood my situation and immediately put in a referral to the adult mental health team. Eventually, I was seen by a fantastic psychiatrist, who also understood my Autistic neurology. She understood that I was hyper-sensitive to the medication I had been prescribed for so long. She understood I wasn’t depressed. What I needed was medication that dampened my near constant fight/flight adrenaline response.

In order to recover and get on with my life I needed to get off the current medication. She devised a gradual tapering off over 10 weeks.

I am on week 6 and I am entering a really tough phase. I was struggling to cope with the nausea, but it only lasted a week after the drug step down and for the other week I was ok. The last stepdown has been horrific, unrelenting and is offering me no reprieve. It’s massively impacting my already fragile sensory system and consequently, my mood.

 Yesterday, was the first full day of being child-free, no demands, no appointments. My daughter has been out of school since January with burnout. She hasn’t left the house. I understand and accept this. We’ve got through together (with a lot of cursing along the way). However, adding in the withdrawal symptoms has been hard on both of us.

She went to York with her Dad and brother for 5 days. As much as I love her, I needed a break.

I had dreamt of this break for so long.

I just wanted to get my threads and embroidery silks out and sew and sew and sew. Glorious repetitive running stitches that explored the minute and intricate patterns imprinted in the cloth. Basking in that most beautiful sound of the needle piercing the cloth. The sound and feel of the thread gliding through my fingers. Marvelling at the minute running stitches changing in colour as the variegated silks performed their magic.

Nope it didn’t f**king happen.


Because I felt nauseous.  The withdrawal from the chemical dependency is messing with my brain. I struggle in normal circumstances, but this is on another level.

Next came the pixelated vision – visual migraines.

I searched the house for my migraine glasses.  I have been organising the house lately and consequently can’t find a f**king thing.  This is made more difficult when your vision is obscured by pixelated world which is worthy of a Minecraft creative genius. Eventually, I found a child’s pair of Dora the Explorer sunglasses (don’t ask).  I then embarked on a search for Ibuprofen. Once the pain subsided and my vision returned (and the indents of the Dora the Explorer glasses in my temples had disappeared).

I got mad.

I never wanted to take these drugs in the first place. These drugs have meant that I have literally lost 20 years of my life. I just accepted this situation because I thought I needed fixing, That something was wrong with me that I couldn’t manage with everyday life.

There is nothing wrong with me. The thing is I didn’t need fixing in the first place.  That’s why the medication never worked.

It wasn’t until I happened to connect with another undiagnosed autistic adult a few years ago that I began to realise what was going on.

I started to read first-hand accounts of late diagnosed women.  I realised that the suspicions I had when I was studying psychology in the early 1990’s and read Donna William’s book ‘Nobody Nowhere’, were in fact correct.

 At the time I had dismissed my intuition because the taught narrative at the time was that Autistic individuals treated people like inanimate objects. They lacked empathy. They were locked in their own world. I had too many feelings and cared for people deeply.

My intuition was spot on, so, in 2017 aged 44, I sought a private diagnosis. The assessment confirmed that I was indeed Autistic and not mentally ill.

 I felt relief and euphoria.

 I am wonderfully, beautifully, uniquely Autistic. I expected the world to understand. I thought that armed with my diagnosis, I would gain the support and understanding that I so desperately needed. I naively thought the world had moved on.

The autistic world has but society hasn’t.

That realisation led to extreme burnout.

I was refused the support I needed and was prescribed drugs that weren’t designed for my neurology and my hyper-sensitive system. The prescribed medication has damaged me not helped me. It has restricted my freedom and prevented me from living my life.

 I’m f**king sick of being grateful for morsels of ineffectual support and accepting what the system offers.

I’m angry and I want to facilitate change – right here in this moment.

But I can’t, only through my words and my thoughts typed on these pages. Hoping some person will take note, stand with me and tell their story too. Collectively our lived experience will hopefully be listened to and change will evolve. Then my experience won’t be for nothing.

Many medical professionals don’t understand the experience what it is to be autistic.

I certainly can’t encapsulate it in a 10-minute appointment.

I can’t verbalise my unique neurological differences. How I experience the world differently to the average neuro normative individual.

 The medication drugs trials are largely based on the neuro normative individual. Guess what? That’s not me and it’s not a significant minority of the population.

Any training professionals subsequently receive (if any) about autism is largely delivered by organisations that don’t actually consult Autistic individuals. They deliver training based on regurgitated textbook facts, based on observable behaviour not actual lived experience. Training needs to be delivered by actual Autistic Adults.  These people do exist in the form of Autistic Advocates. They are there waiting, ready to go.

 Most training doesn’t reflect our lived experience and this needs to change. I’m not neurotypical, I don’t ever want to be. My brain doesn’t work the same, it’s natural variation not a disorder. I don’t experience or process the world the same as non-autistics.

Doctors are trained to recognise symptoms, to treat illness.

I am not ill.

I am Autistic.

I wasn’t depressed when I visited that GP on that fateful day and that has led to this moment of me writing out my anger.

I told that doctor that I wasn’t depressed, but they made the judgement that I was. I just couldn’t communicate my depression because I ‘had’ autism.

The same doctor that had supported me withdrawing off a previous medication. That medication had caused tremors so bad I couldn’t hold a cup of tea steady without burning myself. I couldn’t create, sew, something that is integral to my wellbeing. This very same doctor, there and then, prescribed this medication that I am into week 6 of withdrawing from. That I am now chemically dependent upon.

This medication hasn’t helped me and at its best has numbed me from the world and all its beauty. In fact, it has made my daily life worse. How many times do I have to say I am not depressed for them to listen? I am overwhelmed with the world that moves too fast, is too bright and is too loud.

I am autistic and professionals do not know the damage these drugs do to my system that they so readily prescribed and how they affect my functioning, my quality of life. Naively, I kept going back to the doctor. I could never see the same doctor. I could get the referrals to the specialist professional that I needed but was refused as didn’t meet their arbitrary constructed criteria. Instead, different doctors kept increasing the dosage to the maximum and now I am addicted.

 I am needlessly suffering because of the ignorance of the system.  

The failure to listen or to understand the real-life experiences of Autistic individuals. It sometimes feels that we are so pathologized, that any sense of humanity is lost, and we are dehumanised.

 We are a problem to be solved, which is far from the truth.

 I am angry, I feel deep grief, not for being autistic but because I am disabled by the system. I’m angry because I can’t fulfil my potential. I am trapped in this body and in this society that isn’t designed for me or won’t make the accommodations for my neurology.

Things desperately need to change, and I want to be part of this. I don’t want to sit here and moan and grumble. I want to take action.  In order for me to be part of this change I need to get off this f**king medication.

All I ever wanted was peace in my head. To understand myself and my experience. I’m beginning to do that because I’m connecting with my community – my neurokin. My experience isn’t an isolated one.  I talk online to other Autistic adults and listen to webinars led by those with lived experience. They too don’t have the answers. What they do offer is the opportunity for authentic connection and acceptance. Alongside them I continue to learn about my neurology, culture and identity as an Autistic Adult. This is what I need – a safe place to connect, explore and learn.

I don’t need social skills programmes. I don’t need ‘back to work’ programmes because I can’t work in the environments that exist. They’re not designed or adapted to my needs. It sets me up to fail every single time and yes,

 I get back up, but I’m getting tired. Why is it so hard for professionals to take note of real-life lived experiences? Why is it that only the Autistic population who are expected to change and adapt? Why can’t professionals only pay attention to those who have no lived experience of our inner world and emotions? It would save so much money, so much trauma, so many lives, if they just stopped, listened and involved the Autistic community. We are the experts.

I don’t want my life to end or to give up on life. This week I felt like doing just that.

Life is precious.

Life is beautiful.

But in this moment, I feel imprisoned.

I can’t walk in the woods and look at the most amazing patterns of the leaves and flowers. Watch in wonder at the shadows the trees make, the reflections dancing on the pathways with the breeze. I cannot walk down to the sea and watch the waves that calm my racing, spiralling mind.


 Because of the drugs I was mindlessly prescribed. I complied and trusted the doctor as this is my nature. I naively thought that they were the expert.

They weren’t

I am the expert, I have the knowledge.

This my body (no other f**ker would have it now) and I know best and god help anyone who tries to prescribe this s**t to me again.

My story is evidence as to why autistic people with lived experience need to be listened to, to train, to be part of any research and inform professionals.  So, in the future people like myself can fulfil their potential and live their lives in the way they are meant to.

I have no words left I’m tired.

Rant over.

Aucademy in discussion live: Kim Rhodes – beginning the neurodivergence discovery journey

Recorded and originally aired: Thursday 16th July 2020, 20:00-21:00 BST/London; 12:00-13:00 PT:

Aucademy in discussion live: Kim Rhodes – beginning the neurodivergence discovery journey, with Chloe & Harry of Aucademy

**Please note we are not clinicians or diagnosticians**

Dr Chloe Farahar – Autistic academic, educator, and self-advocate
Harry Thompson – Author, speaker, educator, and self-advocate
Kim Rhodes – Actor, mother to an Autistic child who meets the pathological demand avoidance profile

We created this video for free, but we would welcome a very small donation so that we may pay the speakers for their time and work. Please consider donating £1 here.