#snavej

Okay so what are all these signs, let’s start a list! Autistic people can have:

Rituals that they refuse to change,

Odd or repetitive movements,

Unusual sensory reactions,

Be clumsy or awkward,

Nervous in large social groups,

Have a hard time making friends,

Speak in unusual ways or with an odd tone of voice,

Talk only about themselves/their interests,

Have narrow, often obsessive interests,

Want to be alone, or want to interact but not know how,

Avoid eye contact,

Have a hard time understanding body language,

Have trouble understanding other people’s feelings or talking about their own feelings,

Poor/abnormal posture, often sit on chairs oddly,

Trouble with left, right and other directions,

Large or unique vocabulary,

Lack of organisation,

Intense compassion/empathy,

Intense anger or no anger at all,

Connections with animals,

Difficulty understanding pop culture, styles, trends, etc.

Rigid in their ways,

Easily distressed,

Delayed speech and language,

Lack of imitation of others or imaginative play,

Indifferent to the feelings of others,

Sensitive to light and sound,

Self-stimulatory behaviours (stimming)

Echolalia (repeating or echoing words or phrases)

Unusual emotional responses,

Meltdowns,

Responds adversely to physical affections,

Does not initiate conversation,

Very poor diet,

Frequently walks on tiptoes,

Socially withdrawn/socially awkward,

Self-injurious behaviour,

Makes irrelevant remarks,

Difficulty with abstract language and concepts,

Need for sameness,

Severe upset when routines are disrupted,

Attachment to unusual objects,

Fascination with spinning objects,

Good memory for repeating lists or facts,

Unlikely to discriminate against someone on basis of race/gender/age etc.

Unlikely to give superior status to the wealthy or those high up in an organisation,

Have their own set of values,

Can hyperfocus,

Struggle to separate themselves from their work,

Lack the ability to filter information received, 

Alexithymia - the inability to describe emotions in a verbal manner,

Likes patterns, putting things in order,

Often limits diet,

Often wears the same clothes,

Black or white thinking,

Auditory processing disorder…

Okay, I’ll stop there. I could probably go on if I wanted to, because although I’ve written a lot of things there, these are all manifestations of the clinical diagnosis criteria.

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Diagnostic Criteria for 299.00 Autism Spectrum Disorder

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Deficits in nonverbal communicative behaviours used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behaviour to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behaviour.

Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behaviour.

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Taken from: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

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Back to the story

So I went to my doctor after all of this reading. I was convinced. Nothing had ever made so much sense to me in my entire life as reading about autism.

I was, at this point, what people in the autism community call “self-diagnosed”. Now I was lucky, I could go on to get a “proper” diagnosis. Not everyone is as lucky. Many doctors do not believe that girls/women can be autistic. Many doctors do not believe that ethnic minorities can be autistic. Many doctors do not believe adults can be autistic. In some countries, people do not have free healthcare and so they cannot afford a diagnosis. There are many reasons why people can’t/won’t get diagnosed.

The point I’m trying to make is that if you see someone posting about being self-diagnosed, don’t be all “oh but a doctor hasn’t said it so you’re not”, because that person does not need your doubt and it does not help anyone. Their self-diagnosis helps them to navigate their life and it does not hurt anyone. Honestly, the amount of people that are “wrong” about their self-diagnosis is probably very small, and those that are probably have some other kind of neurodivergent condition such as ADHD.

Anyway, my doctor gave me a form to fill in, a questionnaire. A series of questions aimed very much at the male expression of autism. I felt horrible at the time, because I knew exactly how to answer these questions to fill the boxes required. I knew because I had read so much about autism that I knew what they wanted to hear.

I filled it in honestly. I scored highly enough anyway.

My doctor did not know who to refer me to. She had never had to refer an adult before. She asked around and found out what to do; I got put on a waiting list.

A while later, at work, I found out I could get tested privately and work would pay for it. Oh, how I love my job. I spoke to someone who had been the manager of another employee who had gone through the process. That helped.

I talked to the man who was supposed to be the disability advisor, he made me fill in the same questionnaire that my doctor did. I filled it in again.

I was on another waiting list.

The advisor had also recommended me a book, which I bought and read and hated. The language used very much implied that I would never be ‘great’, just ‘coping’. It was written by a neurotypical person. I told the advisor by email that this book was stupid and damaging. He did not reply.

Months later, the private assessment happened. I spent an entire day with a clinical psychologist and a speech and language therapist. My parents and manager came too. I answered questions, had to explain things to them, made up stories with random objects. My parents, mainly my mother, talked about my childhood.

At the end of it all, they decided I was autistic.

I was ecstatic.

The day before, a person at work said I was a hypochondriac. One of those people who read about conditions on the internet and convince myself that I have them. I still do not talk to that person.

Finally, everything made sense. Finally, I had a reason why people made fun of me for reasons I could not fathom. Finally, my weirdness had a name.

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The Gender Issue

So there is a ‘gender issue’ with autism and it’s diagnosis. Everything is aimed at young (white) boys. It’s designed for the stereotype of the young boy who likes to collect trains. And that’s why there are five times as many autistic boys in comparison with girls.

People of colour, women and girls are very often undiagnosed or misdiagnosed.

Generalised anxiety disorder, depression, OCD, social anxiety disorder, panic disorder, various eating disorders, borderline personality disorder, ADHD…

The list goes on.

Now, that’s not to say many girls don’t have these things. Often they do. But often they have those and autism.

I very much doubt there is five times as many autistic boys. I think there are just a hell of a lot of women and girls who are undiagnosed.

Why this disparity? Well, autism presents differently in girls, or perhaps, society sees it differently.

When a young boy is quiet and withdrawn, happy to play by themselves, something is wrong. When a girl is quiet and withdrawn, she’s just shy. There’s also a lot of evidence to suggest that girls are a lot better at masking their autism.

Essentially, due to the societal pressure on young girls, they hide their autism and mimic their peers. That’s why the most common time for a woman to get diagnosed with autism is when she has children of her own and they’re getting diagnosed.

Is it genetic? There’s no strict evidence of an ‘autistic’ gene, I don’t think. But its quite common. When I was getting tested, I gave the previously mentioned book to my mother and said, “Hey, can you read this, I think I have this”. My mother read the book and told me she thought she had given it to me. She got tested two months ago.

I also look at my father and see many of the traits. But he has no interest in getting tested.

If you’re intersted, google “autism in girls” or something similar, there are plenty of resources.

The result

So I have my diagnosis, my work is fully informed. I am now protected by the Disability Act. I can’t use disabled parking spaces, but some autistic people can, if they need it.

What does this mean for me? It means that my employer has to make adjustments for me to make me comfortable for work. Changing the lighting, giving me a quiet place to work, working with me on deadlines and stuff. They know now (officially) that I have issues with auditory processing, and that they should take that into account.

I’m lucky, my employer has been good about this, and it is in their interest to. Autistic people can be an asset to any company. They are often experts in their chosen field and will work solidly on stuff they enjoy.

Lots of autistic people are not as lucky. They are one of the highest unemployed groups. Workplaces are full of unwritten rules that are hard for autistic people. This brings me on to…

Autism Acceptance Month

April is Autism Acceptance Month. You may see this as Autism Awareness Month in some places. But I don’t like that. “Awareness months” and “awareness days” are often reserved for horrible diseases like cancer, for which we want a cure.

There are a lot of resources out there from damaging institutions this month, such as Autism Speaks. They are advocating for a cure and also promote ABA (a type of ‘therapy’ that is disgusting and should not be allowed). If you take anything from all this, please do not support Autism Speaks.

There is no cure for Autism. It is a developmental disorder. It’s not a disease.

If you wanna do something for Autism Acceptance Month, there are some resources here: https://www.autism.org.uk/get-involved/world-autism-awareness-week.aspx

But what about the vaccines?

Of course, I cannot talk about autism without mentioning the vaccines!

In the 90s, about 1 in 150 children were diagnosed with autism, by the early 2000’s, this went up to 1 in 68. One of the big things that had changed in this time was the number of vaccines children had. 

There have been many studies regarding autism and vaccines. And there was one that said there was a link between autism and vaccines. In this study, there were 12 subjects.

Now I do statistics for a day job. So I can tell you categorically, that 12 subjects for a study is not enough for decisive proof. The person who did this study was struck off and rightly so.

But the media got hold of this idea.

And so the anti-vaxxers rose up, refusing to vaccinate their children from deadly diseases because obviously, being autistic was worse than being dead.

In summary, vaccinate your children.

Side note, I, as an autistic person, am allowed to make jokes about vaccines. For example, I received some vaccinations before travelling and joked with the nurse that I was ‘topping up my autism’. This is funny because we both knew it was wrong.

‘Autistic person’ vs ‘person with autism’

This one is a tricky one. I’ve seen arguments both ways.

‘Person with autism’ puts the person first, but also makes the autism sound like an accessory. 

‘Autistic person’ puts the disability first, but you can’t separate the person from the autism, it’s intrinsic to who they are.

Basically, this is up to the person. If they prefer one way or the other, use it. It’s like pronouns, you use what the person you’re talking about asks you to use.

Personally, I’m not too fussy, but I lean towards ‘autistic person’. 

Asperger’s vs Autism

Asperger’s was merged into the general Autism diagnosis criteria a while back. Asperger’s is what is sometimes called ‘high functioning autism’. The autism community do not like the term ‘high functioning’ because it denies aid, in the same way that ‘low functioning’ denies agency. The criteria for ‘low functioning’ is having an IQ under 70. So it’s quite broad.

Also people who have been classified as ‘high functioning’ don’t necessarily function well in everyday life without help.

Also, Hans Asperger’s was a bit of a knobhead, so a lot of people don’t like using his name.

Headcanons

A headcanon is a fan’s personal, idiosyncratic interpretation of canon, such as habits of a character, the backstory of a character, or the nature of relationships between characters. The term comes from the fact that it is the canon that exists in a fan’s head.

So when I say ‘Oliver is autistic’, this is my personal headcanon. Do I want it to become fanon? Yes, of course, I do. In the same way, I love that Yasuhara x Gene has become popular (for which I take full responsibility).

But if you disagree with it, that’s fine. You’re allowed to do that. I will not think any less of you for it. Because at the end of the day, the author has not come out and said ‘Oliver is autistic’.

Personally, as an autistic writer, who has always written some of her characters as autistic, whether she knew it or not, I suspect the author of Ghost Hunt might be an undiagnosed autistic person. Because Oliver is not the only person I recognise traits in… But that’s for another day.

If you only take one thing away from reading all of this, then let it be this:

If you’ve met one autistic person, that’s it. You have met ONE autistic person.

We’re all different, just like everyone else.

And now for what you’ve all been waiting for…