MY HISTORY OF AUTISM
If you ask me, I would have always said I thought that I was autistic. That isn’t exactly the truth though when I get down to it. It wasn’t until I was 29, nearly 30, that did I learn that I was tested for “Aspergers”* not long after I was turned 9.
According to the report, there was a “history of concern regarding [Ace]’s language development (ie. dyspraxia), undeveloped imagination, and motor problems” … “is generally functioning in the high range of abilities (FIQ = 113), although there was some discrepancy between her verbal ability (VIQ = 119) and non-verbal abilities (PIQ = 104), the later falling in the average range” …. “the Speech Pathologist felt that her language skills were within normal limits. Her only concern was hyponasality and a mild articulation problem.” Mum referred me to these people for a second opinion “as she had concerns regarding [Ace]’s word retrieval and quality of expressive language. She felt that she was “economical” with her speech, and often did not elaborate. Other concerns expressed were some difficulties with creative writing and pragmatics/conservational skills.”
All of this was complicated by the fact that I was born ill, nearly dying in fact and while I started saying single words at 1 year and putting small sentences together at 2 years it was when I was fourteen months when it was identified that I was “deaf” and needed grommets when I turned 20 (I had grommets up to the age of 9) and then speech dyspraxia at the age of 3, which was followed by speech pathology for the next two years. It wasn’t until I was older that the pragmatic conversational skills were identified “for example, [Ace] was reported to have difficulties greeting people, sustaining conversation, and inquiring about others. [Ace] also has difficulty understanding jokes, for example, she might look at some-one else’s facial expression to ascertain the appropriate response.” … “Mrs Taylor indicated that [Ace] interprets language at a very literal level and often focuses on details, missing the big picture.” … “[Ace] was described as a child with a flat affect who is not easily excitable. [Mum] said that she often has difficulty gauging [Ace]’s mood. There was some indication that [Ace] becomes quite anxious in social situations, for example, she does not like approaching groups, and it is rare for her to successfully join a group. [Ace] functions best in a structured situation.” … “Socially, [Ace] has difficulty organising play with other children and is often not invited around to play with other children. Mrs Taylor indicated that [Ace] is very pleased when she is not left to play on her own. [Ace] was described as somewhat socially naive.” … “Other anomalies noted by Mrs Taylor included, a high pain threshold, unexpected responses to stimuli, for example, the wind, beach sand. [Ace] also has an odd running style, for example, appearing stiff and wooden.”
Knowing what I know now, reading this report and their reports makes it seem very obvious that even now that I was obviously autistic at this time. Key points from the report were
- the ability to participate in a reciprocal manner was often stilted by my poor language pragmatics
- I had difficulty organizing my verbal responses and gauging the quantity of information that I was required to provide. When I was uncertain about how to respond, I changed the topic of the conversation
- I found school difficult in the morning because I didn’t know how to greet the other girls, but by the end of the day, I found it easier to talk and join in.
- I found it difficult when I ran into a friend unexpectedly outside of school, as when I didn’t expect to see someone I found it difficult to initiate conversation.
- Interestingly to note when I was tested on my pragmatic language it reinforced the above, in that when I had difficulties with conservation when a specific response was required I would become “linguistically dysfluent” in that I would pause, hesitate, speak in a fragmented way or provide a lot of irrelevant information. I also had a number of residual articulation problems, especially with voles and an inconsistent th -f substitution presented with some unusual prosody/inflections at times.
If you’re at all familiar with Autism, especially with how it presents in people who are female** then reading the above it should be startling obvious that I should have been diagnosed with Aspergers at the time of this testing.
Except I wasn’t because autism in females is still barely understood today.
Instead, I was described as having “expressive language and pragmatic difficulties” with concerns about my “ability to function socially and understand interpret other people’s intentions and mental states” along with a history of “motor incoordination and clumsiness”. “[Ace] demonstrated a strong desire to be social and to interact with her peers although her poor organisational expressive language and pragmatic abilities often make this difficult. Moreover, the long standing nature of [Ace]’s social language and pragmatic difficulties seem to have caused [Ace] to become socially anxious. [Ace]’s preference for structure maybe a mechanism for reducing her anxiety.”
They diagnosed me with social anxiety instead. Okay, I probably do have social anxiety because of everything they identified above but they were testing me on how male people present when they have autism.
I’m now in my early 30s, and I dislike group social activities, I struggle to have conversations and I can quite confidently say that working in a customer service role when I was fresh out of High School was perhaps the best thing for me as I was forced to learn how to do small talk.
THE HISTORY OF AUTISM
Let’s first talk about the history of Autism to better understand why this will have occurred.
The term autism was first used by the German psychiatrist, Eugene Bleuler who used it to describe some severe cases of schizophrenia the action of “retreating to the inner life to avoid facing the harshness of reality.”
According to the National Autistic Society of the UK was first described by Leo Kanner in 1943, with it then being known as the Kanner Syndrome or “Early Infantile Autism” which he thought was to be rare. It wasn’t until 1966 when Victor Lotter published the first results of a study of children with the behaviour pattern described by Kanner located in Middlesex, which identified the rate of Kanner Syndrome as being 4.5 per 10,000 children. According to Healthian “Kanner’s syndrome is a complex brain abnormality that affects the way the brain uses or transmits information. It is a severe complex developmental disorder that may occur in early childhood.” … “The seriousness of the condition differs between individuals, ranging from the most severe (extremely unusual, repetitive, self-injurious, self-harm, and aggressive behavior) to very mild.” …”
The extreme issue with social interaction are the most common symptoms of Kanner’s syndrome and some of the most visible signs include;
- Avoiding eye contact
- Avoiding physical contacts such as hugs or cries and displays of discomfort when picked up
- Inability to play make-believe
- Inability to point out interesting objects
- Inability to respond to conversation directed at him/her
- Practising excessively repetitive behaviours
- Repetition of words or phrases
- Losing skills and language after learning them
Social interaction starts from birth because we are social beings. Kids with Kranner’s syndrome have difficulty making and maintaining social connections.”
In 1979, Wing and Gould undertook a study of the prevalence of autism in children with special needs in a borough of London. “They found a prevalence in those with IQ under 70 of nearly 5 per 10,000 for this syndrome, closely similar to the rate found by Lotter. As well as children with Kanner autism, Wing and Gould also found a larger group of children (about 15 per 10,000) who had difficulties with social interaction, communication and imagination (which they referred to as the ‘triad’ of impairments), as well as a repetitive stereotyped pattern of activities. Although these children did not fit into the full picture of early childhood autism (or typical autism) as described by Kanner, they were described as being on the broader ‘autism spectrum’. “
Aspergers was first identified by Hans Asperger (though not named as such until much later) in 1944 in a study of children with many similarities to the children with Kanner Syndrome but had “abilities, including grammatical language, in the average or superior range”. While there has been debate about how Kanner Syndrome and Aspergers both share “the triad of impairments of social interaction, communication, and imagination and a narrow, repetitive pattern of activities”.
It wasn’t until 1980 that Autism entered the DSM as a separate entry from schizophrenia and no longer required the presence of hallucinations to be diagnosed. It was made up of four subcategories infantile autism, residual autism, childhood-onset pervasive developmental disorder, and an atypical form. In 1987 it was further revised to include people with milder “symptoms”.
It wasn’t until 1988 and the release of the movie Rain Man that both helped and harmed the societal perception of awareness. While it made it increased public awareness about Autism, it, unfortunately, started the stereotype of what autistic people were like. This has led to a significant gap between boys and girls being diagnosed with Autism, in fact, boys are speculated to be nearly four times as likely to be identified and diagnosed at a young age than girls are.
Aspergers itself wasn’t entered into the DSM until 1994 as a separate subcategory of Autism. This would remain the case until it was revised in 2013 and entered under the title “Autism Spectrum Disorder”.
So why are boys more frequently diagnosed than girls? If you go back to the DSM-III (1980 edition) there are a few things to note in relation to this:
- Age at onset. By definition, the age at onset is always before 30 months.
- Impairment. The disorder is extremely incapacitating, and special educational facilities are almost always necessary.
- Prevalence. The disorder is very rare (2-4 cases per 10,000). It is apparently more common in the upper socioeconomic classes, but the reason for this is not clear.
- Sex ratio. The disorder is about three times more common in boys than in girls.
Diagnostic criteria for Infantile Autism
A. Onset before 30 months of age.
B. Pervasive lack of responsiveness to other people (autism).
C. Gross deficits in language development
D. If speech; is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.
AUTISM IN GIRLS
As noted above, the DSM-III said that it was about three times more common in boys than in girls but recent research is starting to indicate that this is not actually the case it actually presents differently in girls than it does boys.
According to Autism Awareness Australia that even though Autism presents differently in everyone, common characteristics in girls (and women) with autism are:
- Special interest in animals, music, art, and literature
- A strong imagination (might escape into the worlds of nature or fiction)
- A desire to arrange and organise objects
- Not wanting to play cooperatively with female peers (for example, wanting to dictate the rules of play or preferring to play alone to maintain control)
- A tendency to ‘mimic’ others in social situations in order to blend in
- An ability to hold their emotions in check at school, but be prone to meltdowns or explosive behaviour at home
- Strong sensory sensitivities, especially to sounds and touch (for example; clothing tags, socks or even deodorant).
If you think of an autistic boy, compared to the above you can immediately see the differences which can account for why so many of us are getting diagnosed later in life. Girls are taught, from a young age how to behave to fit in and for an Autistic girl, this is especially important as we learn to ask in order to appear “normal” (Mask = mimic others in order to blend in).
In an address to the Annual Women’s Health Update, Professor Tony Attwood, international author and clinical psychologist, spoke of the diagnostic issues facing girls and women. He believes girls and women are creative in how they cope with being different. “The girls are better at camouflaging their confusion, and we are getting better at seeing how they do it,” he says. “The girls are wonderful imitators.”
A strategy girls may use to work out what somebody is thinking and how they are feeling, Professor Attwood adds, is the reading of fiction.
“So as you are reading Harry Potter, and especially Hermione, in words very clear to understand, is what someone is thinking and feeling. Hermione is the quintessential ‘aspie’ girl,” Professor Attwood says.
“At Hogwarts, she has no female friends, she’s a total tomboy.” (Amaze 2017) (I will note talking of Harry Potter that I firmly believe that Luna Lovegood is Autistic, I’ll talk about that in another post quite likely cause this is getting really long!)
Atwood has posted chapter one of his book at the link above. In it, he points out that “The teenage girl may have effectively camouflaged her autism. She may have “flown under the radar” and not have been considered for a diagnostic assessment for autism. Every day she acted out the role of a typical girl, so much so that she should be awarded an Oscar for her performance. She has a superficial sociability that is effective, but exhausting. She also has a lack of social identity, other than being the person that others expect her to be.” This camouflage is what is known as masking and as we women get older it gets harder to do as Atwood points out.
“Camouflaging can delay the diagnosis of autism, eliciting comments such as, “You’re too social to have autism.” This will also delay self-understanding and self-acceptance (Bargiela, Steward, and Mandy 2016). A delay in confirming the diagnosis will delay access to appropriate support networks and services for those who have autism.
Research has also confirmed that camouflaging is associated with poorer mental health outcomes and is not associated with well-being (Hull et al. 2019). Camouflaging may contribute to high levels of anxiety and the development of clinical depression. When a mood disorder is diagnosed, psychological treatments such as cognitive behaviour therapy will need to be modified to accommodate the characteristics of autism (Attwood and Garnett 2016; Gaus 2018; Scarpa, Williams, White and Attwood 2013).”
Speaking from personal experience? Camouflaging is exhausting especially when you have to do it all the time.
The exhaustion one feels from camouflaging/masking means as we get older it is harder to do and as more and more research happens into how women present with ASD it means more and more women are getting late diagnoses. Another common situation is when a child is diagnosed their mother might realise that they have it too based on the child’s diagnoses process. Women can also be misdiagnosed like I was as a child, but these can also include diagnoses of ADHD, OCD, Anorexia, Anxiety, and Depression (I have many of these supposedly).
ME AND AUTISM TODAY
This is what the blog post was actually supposed to be about but I got… sidetracked? Remember how I said as a child I didn’t know how much information to give when asked a question? This is it, even today I give way too little or way too much when I get started on something. I have my own quirks, my own special interests that I can infodump on (this is quite ironic as I’m doing just that about autism). I have a lot of things that annoy me – certain tones of voice and textures (sand, a lot of grass, cold water, various materials especially wool, against my skin. Sometimes I can’t stand the feel of pyjamas on my skin in bed but sometimes I have to have them) – a lot of this also stems from how stressed I am like other health issues I have. The more stressed and anxious I am, then the lower my level of dealing with things (the more stressed, the more likely I will have problems with textures and voices etc). I have sensory processing problems, which are exacerbated by the scars on my ear drums from all the times they burst when I was younger, which means I struggle to process what is being said especially in large groups with a lot of background noise I tend to focus on the background noise and not on the immediate conversation going on around me. People eating and breathing (snoring too), the sound of chip packets and many different tools just set me on edge.
My genetics dispose me to have an addictive personality. We have a long history of alcoholism and other problems in my family. It’s something I’ve always been well aware of during my life. I’ve always easily become obsessed with things and hyper-focus on them for months if not years at a time. Some of these can be, Autism and the history of it (you might have guessed by this), the Tudor Family (Henry VIII, Anne Boleyn and Elizabeth I in particular) though Queen Victoria and the rest of the British Royal Family is up there. The First Fleet has been another area on and off during my life. Other areas are tv shows and movies including Star Wars Universe, Star Trek (especially Voyager), The West Wing and Harry Potter fanfiction to name a few. Other things I’ve hyperfocused on include grassroots activism and the fight for equality, with a focus on Human Rights, Homelessness and LGBTQIA+ people. If you know me you’ll remember how hard I worked on the Victorian State Election that just occurred.
I much prefer to be in quiet environments especially by myself when I can control the sounds and sensory inputs. Despite that I crave physical touch from other people, I love hugs and people petting my hair or scratching (gently) my back. I find shoes and socks hindering and much prefer to be barefoot if I can get away with it. Loose clothes such as hoodies are amazing but denim isn’t something I’m a fan of. I can’t have anything around my neck for the most part so I’ve always struggled with scarves in the colder months.
I could keep going on and on about this but I’ve already written so much more than I originally planned to so I probably should stop rambling.
NOTES
* Aspergers was a term used for “high functioning” individuals on the Autism Spectrum during the 90s and early 00s. It is now argued that the term shouldn’t be used, same as the functioning terms – low functioning and high functioning because of the controversies surrounding Hans Asperger. While he was not a member of the Nazi Party, has been linked to it and shown to have co-operated with them. As part of his work, he referred disabled (“low functioning”) children who were seen as incapable of social conformity, or had physical or psychological conditions judged undesirable to the Am Spiegelgrund clinic in Vienna’s Am Steinhof psychiatric hospital, where almost 800 children were murdered between 1940 and 1945 as part of the regime’s euthanasia program. He would protect those he deemed intelligent or “high functioning” from being sent to death as they could “contribute to society”. (source)
** I am aware I only use binary gendered language in this post. This is because Autistic Research tends to talk about autism in these gendered terms. I am currently unaware of if any research has been done into trans people (including nonbinary/genderqueer etc) who are autistic and how they present.