Autistic Interviews #19 Joe S

Welcome to the series of online interviews “Autistic Interviews”!

Here you will find different Autistic Voices and Real Life Stories shared, each one unique and highlighting different lived experiences, whilst sharing a common ground: autism. Participants choose which questions to answer, in their own style, making each interview a totally authentic real life story! 

There will be more interviews being conducted in the future including more Autistic Interviews, Family/Carers/Friends Interviews, Self Diagnosers who were assessed and told they are not autistic (what happens to them?!), and collaborative interviews with multiple autism folk answering questions together for a super interesting look at the spectrum! 

If you, or someone you know, would like to take part in future, please email auntie-autism@mail.com to be alerted about and sign up to future interviews.

Views expressed in the interviews are the individuals, not my own. 

Now, for the next interview in the series, here’s Autistic Interviews #19 Joe:

Name: Joe

Age: 42

Sex: Male

Nationality: British 

Diagnosis: Diagnosed autistic at age 33

If diagnosed autistic, what age were you at diagnosis?

33 when officially diagnosed. I realized when I was 21 that I had Asperger’s Syndrome but was unaware just how high I was on the spectrum or the extent to which it determined my personality and experiences. My mother realized I was Autistic when I was in my teens after reading a newspaper article, but did not tell me and chose not to seek professional advice, because she thought it would affect my chances of getting a job. Her decision to neither tell me or have me officially diagnosed had tremendous and wholly negative consequences on my adult life.

Why is diagnosis important to you?

I think it is important for all people on the spectrum to have an official diagnosis and to be aware that help is available at all times. It helps us realize we are not alone and that it is not our fault we face the various difficulties in lfie that we do, nor is it something to be ashamed of.

Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms makes you feel?

I do not think it is necessarily a disorder so much as a different type of neurological development. But in the sense that it affects the way we relate to a world that is very much configured for neurotypical people, and our relations to others, it has consequences similar to those that affect people with disorders.

Is anyone else in the family autistic? How did they all find out?

I suspect Autism runs in the family to a degree as my father, mother and uncle have all displayed traits that are typical of people on the spectrum, but as they are of an older generation and less was known about Autism in their youth, they have likely remained unaware. My sister generally behaves in a neurotypical manner but now thinks she may have some form of ADHD.

How did you end up getting diagnosed autistic?

I should have been diagnosed as a teenager because my mother read a newspaper article about Autistic people and realized I was likely Autistic, but chose not to have me diagnosed because she felt it would affect my job prospects as I got older. This caused tremendous difficulty for me throughout early adulthood as I did not realize how high I was on the Autistic spectrum and thought it was my fault that I was experiencing difficulties functioning in society, and that I was struggling because I was stupid. I realized I matched the description of someone with Asperger’s Syndrome after a housemate at university told me he believed I had the condition. After realizing, I spoke to my mum about it and she affirmed that I almost definitely had it, but explained her reasons why she didn’t think I should get an official diagnosis; she also said it was a ‘personality type’ and not a ‘disorder’ as such. I went through early adulthood with some awareness of my condition but still felt it was something to be ashamed of, while failing to realize just how high I was on the spectrum. It was only after a severe mental episode at the age of 33 that I began to seriously confront my mental health problems and commit myself to understanding and managing them more effectively. It was at this point, while researching Autism online, that I realized how high on the spectrum I was, that nearly all my various problems could be explained by Autism and that I would have benefitted enormously had I been diagnosed with the condition when I was younger. I have an official diagnosis now and have managed my condition much better since then, while my confidence has improved enormously.

When and how did you realise you are autistic? 

To give some more background: From when I was a very young child, I had a tendency to be hyper-attentive to detail, to form interests that were very all-consuming and intense, and to be emotionally sensitive and occasionally socially awkward, taking people’s wording overly literally as well as having difficulty reading facial expressions and body language. This continued into my teenage years and early adulthood, although the older I became, the better my sense of social etiquette and reading of other people slowly became.

For late diagnosed people, what effect did diagnosis have?

It  made things much easier for me and gave me a huge boost to my confidence, now that I realized I was not alone and it was not my fault I had struggled in life the way I had.

Do you think getting diagnosed sooner would have had an impact?

It  would have improved my life tremendously during my teenage years and early adulthood if I had had an official diagnosis and professional support. I would have benefitted from therapy and one-on-one support from a professional to improve my functioning in daily life, I would have suffered less anxiety as a result and learned better critical thinking skills, and been better able to understand other people and the world around me. Most importantly my confidence would have improved and I would have had a better sense of control and management of my life in my early adulthood. It is likely my relationships with other people would have been much better as a result of my stronger confidence.

Do you think being diagnosed in childhood was overall beneficial or did it have negative consequences?

The fact I was not diagnosed in childhood had hugely negative consequences, for reasons explained above. I was taken to a child psychiatrist when I was 6 and the psychiatrist said I was completely normal. There was less knowledge of Autism among the medical community at the time and it is likely that if it had been a decade or so later, I would have been diagnosed Autistic.

Do you tell people you’re autistic?

Yes but only when it comes naturally into conversation – I do not force it in nor announce I’m Autistic when I meet someone for the first time. I find that greater awareness of Autism has led unfortunately to severe abuse of the condition as an identity tag, and most people who announce they are Autistic as soon as they meet you are most likely not Autistic at all or are using the claim as an excuse to get away with antisocial and abusive behaviour. Identity politics has complicated things for many young people who are genuinely Autistic, as likewise they are being encouraged to adopt it as an identity label and to use it as an excuse for unpleasant and antisocial behaviour. For these reasons I am suspicious of anyone who immediately tells people they are Autistic or mentions it in a social media bio. I therefore do not automatically tell people when I meet them, and only mention I am Autistic if it comes naturally into the conversation.

Do you feel more confident expressing yourself/advocating for yourself since diagnosis?

Yes, I feel much more confident in myself in every aspect of life since realizing I am Autistic.

How has going undiagnosed affected you? 

I suffered severe trouble in my teenage years and early adulthood due to trouble relating to and integrating with the world around me. I was prone to antisocial behaviour and would occasionally say or do things that I now realize were inappropriate, offensive or just plain awkward for other people, and I feel very bad about this now I am older. I find myself often wishing I could travel back in time so I could undo these things or apologize to the people I upset or inconvenienced. I also suffered severe mental health problems in my younger years, most of which can be attributed to Obsessive Compulsive Disorder. A lot of this was based around magical thinking and various cultish and pseudoscientific ideas I had bought into out of a desperation to find acceptance and assert myself in life. This only led to severe mental health issues and had I realized how high I was on the Autistic spectrum, I would likely have gained a greater awareness of the susceptibility of Autistic people to cult-like beliefs and been able to either avoid buying into these outright, or deprogramme myself from them much sooner. I had a lot of problems with misunderstandings and misjudging people’s intentions, and this affected my ability to form close friendships when I was very young, and meant I had huge difficulty forming romantic relationships and finding a partner with whom I had a healthy and mutual understanding. I was often taken advantage of by narcissistic and abusive people who would manipulate me and abuse me to get what they wanted out of me, and for a long time I had no confidence to stand up to these people and defend myself. I had particular difficulty in saying ‘no’ to people even when I knew they were making unreasonable demands of me. I experienced complications in workplaces due to difficulty understanding office etiquette as well as discrimination and bullying from other employees and senior management. I was extremely insecure in myself throughout my 20s and early 30s and believed for a long time that there was something fundamentally wrong about me and that I needed to change who I was.

Do you have any other mental health diagnosis?

Obsessive-Compulsive Disorder – although in my therapy on the NHS for this condition I was taught that this term is not helpful and that overusing it only strengthens suffering from the condition. I have found it more helpful to simply refer to it as generalized anxiety, or unhelpful thoughts.

Are you medicated/ever been medicated? 

I was on Clomipramine for 7 years for Obsessive-Compulsive Disorder. Not only did the medication not help me at all, but it made my suffering from the condition worse because I found myself in a perpetual haze of mind and dream-like state, dogged by severe fatigue. This depleted my energy levels severely and weakened my focus of thought. As a result of the drug, my problems with the intrusive thoughts only became more severe if anything and my sense of control in life was seriously hampered. It was only when I came off the medication that I felt I had the energy and the psychological strength to really commit to better managing the condition.

Have you ever had positive/negative experiences of mental health support?

A lot of the mental health support I had for OCD in my 20s was superficial and brief and did not go into enough detail or really help me objectively understand the struggles I was facing. It was only when I underwent therapy on the NHS Primary Care in 2017 that I really built a better understanding of my problems and was able to manage them effectively.

In what ways did you feel similar/different to others in childhood/adulthood?

I had trouble fitting in generally, I never integrated into any ‘friendship groups’ and felt I had little in common with others around me and that my peers did not understand me.

What was your childhood and teenage years like for you being autistic?

As mentioned above I had trouble fitting in and forming close friendships. Sometimes I was complimented and made to feel good for being individual and celebrated for being different, but I also experienced a great deal of bullying and exclusion.

If you could go back in time and tell child you anything, what would it be?

I would tell my young self that my mother was a narcissist and did not have my best interests at heart. I would also tell him that it is not his fault he is struggling – I would say that he is Autistic and there is nothing wrong with this, and never to let others make him feel bad about who he is.

Are your family understanding about autism/your diagnosis? Do you feel understood/supported?

My mother (who is no longer with us) was really not supportive even if she put on a facade of being so. I was treated as the scapegoat child and triangulated against my sister, who was the golden child. I thus was always made to feel bad about who I was and that there was something inherently wrong about me. My mother’s emotional abuse of me was enabled, and often encouraged, by my dad and sister and was the main source of the mental health problems I would face as an adult.

Do you live with family & do you think you will ever live independently and leave the family home?

I live by myself now and would have no desire to ever live with family again. I remain in contact with my dad and sister but keep my distance and have very much established myself independently of the family unit.

Do you feel independent in life or do you rely on family or social workers etc for support?

I feel completely independent in myself.

Do you have sensory issues? 

I can be easily sensitive to sudden and loud noises, and to sensory overload with too many things happening at once. I find that the rapid pace of modern life and bombardment with technology can make this particularly challenging.

Do you stim? 

Yes, I can often be twitchy and a frequent move I make is to press my right hand in between my right eye and nose to calm my nerves. Sometimes people can think they are making me nervous in a social environment, and I tell them I am just twitching due to Autism and they should not worry or read too much into it.

Do you have special interests/passions/hobbies?

I have lots of interests and wouldn’t know where to begin – music and certain genres of film and literature, as well as certain parts of history or culture. I find all of these deeply enriching and stimualating of my imagination.

What would you like to say to other autistics?

I would caution them against buying into identity politics, idelogies and cult-like beliefs, as I feel many of them are falling prey to extreme political and neo-religious ideologies that are only causing them more harm than good.

What type of support do you feel you would benefit from?

A support service for Autistic people who are continuing to mitigate against the SARS-CoV-2 pandemic would be extremely beneficial. It would have to be a completely apolitical support service and should not be in thrall to identity politics or gender ideology.

Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)

I am heterosexual although I have always been mistaken for homosexual by other people, mainly because I am gender non-conforming and have a lot of character traits and interests that are more commonly associated with gay men. I have been described as “gay in everything but sexuality” or occasionally as “Metrosexual”. I feel that the strengthening of stereotypes and identity labels in society has only intensified this problem for me. I dislike identity labels and am strongly opposed to the TQIA+ part of the acronym, for this is nothing to do with sexuality and is merely a set of identity labels built on a pseudoscience founded on misogyny and homophobia. The TQIA+, or ‘trans ideology’, is little more than a cult and is having a detrimental effect on Autistic people everywhere, as Autistic people seem particularly susceptible to being groomed into this cult. I feel that had it been around when I was younger, I would very likely have fallen victim to it.

What does gender & gender expression mean to you?

I see ‘gender’ as an unscientific idea that has been used to build a religious cult around. Biological sex is real and immutable, and biological categories such as ‘man’ and ‘woman’ are necessary for our understanding of objective reality. ‘Gender’ is little more than a set of stereotypes about biological sex that has been used to form the pseudoscientific, homophobic and misogynistic idea of ‘gender identity’, the idea that each person has a ‘gendered soul’ that is separate from their biological reality. This has caused anyone who deviates from the stereotypes of biological sex – i.e. anyone who is ‘gender non-conforming’ – to be told their deviation from stereotypes makes them ‘trans’ and thus encouraged to identify as the opposite sex or something in between, and in many cases, to undergo expensive, mutilating, harmful and irreversible surgery which in no way helps their mental condition. People should be allowed to express as they wish without being told that non-conformity to stereotypes literally makes them the opposite sex; this only reinforces stereotypes and encourages misogyny and homophobia. I think the idea of ‘gender’ needs to be abandoned outright and treated as the unscientific belief that it is.

Do you think autism is important to address when exploring gender identity issues? 

I think Autistic people are particularly susceptible to gender ideology, largely because many of us are gender non-conforming. I have many interests and personality traits that are considered atypical for males, and I have often worn make-up and glitter. I have been told that this means I should be identifying as ‘trans’ or ‘non-binary’; this is a harmful idea that only reinforces and encourages compliance with old-fasioned stereotypes. I am not ‘trans’ nor am I a woman in the wrong body; I’m a man expressing myself the way that feels natural to me, and I should not be made to feel this is a problem because it deviates from stereotypes of biological sex.

Are you gender nonconforming? (What does being gender nonconforming mean to you?) Do you think anyone can be gender nonconforming?

In the technical sense, yes, I do not conform to stereotypes associated with ‘gender’. I think it should be considered acceptable for both sexes to express as they wish, just as many people did in the 80s, without being told this means they are in the wrong body or should be identifying as the opposite sex.

Are you employed? Do you struggle to get/keep a job?

I am self-employed and work full time from home. I much prefer this to working in an office due to the office politics and discrimination I had enforced on me in such environments.

Have you had positive/negative experiences in school/employment due to autism/acceptance/ableism/misunderstandings?

I was bullied in a very nasty way by a supervisor at a former workplace for ‘speaking too loud’. I might have been speaking loudly as I know it is not uncommon for Autistic people to speak loudly without realizing they are doing so. But this particuar person really bullied me for it, whenever I would speak to her about a work matter she would immediately divert to how ‘loud’ I was speaking and make patronizing and demeaning comments and gestures about it. She also took the bullying further and circulated emails between other members of staff about me without my awareness, making me feel extremely paranoid in the workplace.

What areas of autism studies/research would you like to see more of in the future?

The tendency of Autistic people to create ‘paracosms’ – imaginary alternate realities that they build in their minds and maintain throughout their lives. Also, Autistic people’s experience of sexuality and our tendency for psychological rather than visceral turn-ons, and for sexual fantasies that may strike others as unusual or atypical.

Are you interested in/do you consider yourself Feminist/Environmentalist/Socialist/Gender Critical/Trans Ally/Humanist etc?

I  consider myself politically a Classical Liberal. I used to consider myself far left, but given that the Left has become extremely radical and often prejudiced of late, I am reluctant to consider myself ‘left-wing’ any more and tend to regard myself as more Centrist. I am Gender Critical and also an Atheist. I do not believe that men can be feminists but I support the feminist cause and agree for the most part with ‘Radfems’.

Political stance?

Classical Liberalism – traditionally left-wing, but seen as more Centrist in the current environment

Thank you Joe for your voice! 🙂

Each day there will be a new interview published here so stay tuned for another autistic voice tomorrow…

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Next interview in the series:

Autistic Interviews #20 Anonymous