Do you remember what you were doing on April 2nd this year? Of course I won’t be surprised if you tell me you don’t necessarily want to remember this period as we were still under lockdown… Well that’s not my point either. Then why am I writing about this special date? Because while I was scrolling on Instagram, I paid attention on a particular event: the World Autism Awareness Day.
Of course I had already heard about autism but I barely knew about it and only had in mind what I saw in movies (mostly clichés I’m afraid). And I probably never payed much attention to this day before then. Although this year we had plenty of time as you know… So while I was reading a post, something got me curious: a link towards a video about woman’s experience of autism. And I wasn’t disappointed! She introduced herself as “the autistic woman who’s speaking and has things to tell you” and then gave her view of some aspects regarding autism. Far from the clichés I (and many people) had. Then I carried on with other videos and quickly understood that I had actually no idea of what autism could be. How did some autistic people get able to hide their traits from their social environment? I also started to wonder if I had ever met some of them (which was probably the case) and above all I told myself that I’d probably meet some in the future as a clinician. People who wouldn’t look so different from other ones, from me, but who would need a different care than “neurotypical” ones.
If you read my first post on this blog, you might be familiar with the mecanism of ‘camouflage’ in women. If you want to take some time before going on, here’s the link: http://blogspedago.univ-nantes.fr/psychologyinenglish/2020/12/06/those-women-who-were-not-autistic/ Else if you’re not afraid of spoilers, an important conclusion was that most of us won’t be able to recognize autistic women by observing them: we need to know how they actually experienced different aspects of their lives. That’s how I discovered them first and that’s what I want to share with you today. I chose to write about two women, Julie Dachez and April, and a man, Alistair H. Based on their videos and on Julie’s blog, I’ll discuss some common themes and also particularities, as each autistic story is unique. Then I’ll mention an additional series of podcasts dealing with other themes that you might also be interested in.
First things first: who are they?
You may have already heard about Julie Dachez: she studied at the University of Nantes and held a conference about autism in 2015. She was diagnosed with autism at the age of 27 and then decided to share her experience in order to deconstruct clichés about autism via her blog and her YouTube channel. She graduated from the University of Nantes as Doctor of Social Psychology. She also wrote the comic book La différence invisible which is already mentioned in another post of this blog.
The second woman, April, also created her YouTube channel starting from her late diagnosis. Her videos deal with different aspects of autism such as symptoms, coping strategies, the working environment and other linked thematics such as disability and giftedness.
Finally the last person, Alistair H, is a transsexual man. He actually started his YouTube channel with videos explaining the complexity of gender and then addressing disability in general, before going further about autism.
Let’s now follow them through this process from their first steps in the knowledge of autism until their diagnosis and even after.
Before diagnosis: discovering autism / auto-diagnosis
Each of these people started their journey to autism by randomly hearing about this syndrome. Alistair H explains having gone first through an auto-diagnosis before being officially confirmed by doctors. He describes how this mental process went for him as well as for other autistic people he discussed with in general.
At first, the person can be aware of difficulties regarding her daily life and relationships with other people but will rather think that she needs to try more to cope. For Alistair, such a reaction is linked to the fact that “everyone lives considering they’re not disabled”. Furthermore he reminds us that we live in a culture valuing personal efforts while experimenting problems and where “a disability can condemn to a low-grade life”. As a consequence, some people can experiment denial and feeling even more guilty about their functioning. That’s what experimented April, who got used to make way too much activities than she was able to.
Secondly, the person might randomly hear about autism by themself of by other people, but at the beginning the denial is still strong. April describes having felt angry towards the psychologist who asked her if she had already heard about autism. And even when she tried to read some books about the syndrome later, she didn’t recognize herself in it at all. She also explains this by the severity of the troubles described which don’t match with women’s experience most of the time. This refusal phase can last a long time and it took several months and a burn-out for April to reconsider her opinions.
Many people will actually need to go further in the knowledge of the syndrome before gradually accepting that they recognized themselves in it. As a result, Julie Dachez describes being first astonished and then flooded with emotions after reading several records of autistic people: “I cried a lot and panicked a little”. She was indeed able to find answers to several of her difficulties such as “incapacity to communicate and exist within a group”, limited interests” and “huge tiredness”. April finally made the connections during the anamnesis part of an intelligence testing with a neuropsychologist. The person might also understand their functioning while getting to know autistic people and observing them. In turn, these ones might even suggest that the person is autistic as well, which Alistair calls “pairdiag”. This part of the process can also be long: Alistair took 4 to 5 years to realize he was autistic.
To be or not to be diagnosed…
The third step might lead the person to get an official diagnosis, which is not the case for everyone. Alistair reminds us that not everyone needs the diagnosis as some people got able to find their own ways to live with their difficulties. For example, some of them got other diagnoses with the benefit of receiving care and sometimes being legally recognized as disabled and with special needs (e.g. for work). Professionals can even agree to adapt their support to the person’s needs regarding autism without an official diagnosis: as psychologists we might be in this situation or need to redirect our client towards a colleague if necessary. In addition, official adjustments for daily life are based on actual difficulties and symptoms but don’t necessarily require a diagnosis. Furthermore Alistair reminds us that the diagnosis procedure can be long and/or expensive. And even when the person wants to go through it they can face some doctors who don’t want to listen to them or, in the worst cases, get abusive.
Even when the person decides to go through the diagnosis procedure, the auto-diagnosis can be of great help to share precisely their difficulties, which is necessary as these ones are hard to detect at first glance. This process can also lean on the relative’s perspective, in order to have some external elements. Indeed we said that the person’s own experience is necessary, especially during adulthood when autistic traits are not obvious at first glance. But people who are close to the person for a long time could have gotten able to detect their differences such as the capacity to camouflage for several hours within a group. Parents in particular can remember details from the early childhood which are not accessible to the person while they’re necessary: their account is often needed in the official diagnosis.
Regarding Julie, Alistair and April, the three of them decided to be officially diagnosed. All of them chose to be seen by private professionals, which is the more expensive way. Indeed, the minimum required are tests for the IQ and for autistic signs (e.g. communication disorder, theory of mind deficit, stereotypies and restricted interests) with a total cost around €600. Other tests might be needed depending on the symptoms such as psychomotor or speech difficulties, which will add to the bill. In the end, the diagnosis needs to be approved by a psychiatrists to be official. The other way in France is to contact an Autism Ressources Center which has the advantage of being free and multidisciplinary but with about 2 years of waiting time for adults. Like Julie Dachez, if the person has a doubt, they can use both ways.
In any case, what mattered to the three of these people was the trust they felt towards their doctors: on her blog, Julie wrote a whole article describing how much her first psychiatrist’s attitude was helpful in order for her to allow herself to express her difficulties.
Let’s also keep in mind that the waiting time for the answer can be as stressful as the period before starting the procedure. While Julie had an answer immediately by her first psychiatrists, April met several professionals who made her wait, including a psychologist who didn’t answer directly at first, which made her believe she was probably not autistic until the official conclusion arrived.
After diagnosis: how to adjust one’s life
The consequences are specific to each person but most of them start to think about specific moments of their past life and difficulties. However not everyone feel relieved after having their diagnosis. Some people like April might first experience the impostor syndrome as they convinced themselves for so many years that they weren’t disabled. She describes having gone through a period of mourning regarding who she thought she was:
“I always believed I had no limits and I could do whatever I wanted in my life by working hard and being willful […] I thought as well I was very sociable but I didn’t realize I was spending much time reserved because there was too much information I couldn’t mange. […] I can do whatever I want, I think, but the question is ‘at what cost?’”
In order to understand themselves better, several people might need to keep informing deeply about the autistic syndrome and the different forms it can take. That’s what Julie did, realizing that she had first to find appropriate resources for her situation: “I didn’t recognize myself in the description of the syndrome. Four pages really made sense in Tony Atwood’s book” (one of the most recommended book about autism). She finally found out what she was looking for in Rudy Simone’s work regarding specific expressions of autistic traits in women. That was her first step before learning how to respect her own functioning.
So what can be autistic people’s needs? Alistair made a whole series of videos explaining important symptoms and what can help to cope, which is what we’re going to describe now.
Understanding the autistic functioning
A symptom which is known but also misunderstood by many people concerns sensitivity. For example, Julie Dachez often experiments being overloaded mostly by sounds and she needs to choose her clothes carefully as there are many that she can’t stand. What she describes is called hypersensitity but as Alistair explains, some people on the contrary have hyposensitivity and others even have both, depending on their senses and sometimes even on specific stimulations.
As a consequence, autistic people have an important fatigability, which is also linked to costly compensation strategies in social situations. One of the most important step after being diagnosed is often to accept and respect this fatigability. Thus April realized that before her diagnosis only important moments of fatigue made her realize she had endured too much sensory aggression form her environment.
However, such a reaction is necessary as autistic people including adult women are subject to autistic crises. These ones can take two forms: the shutdown and the meltdown.
The first one can be described as a “negative” symptom as the person withdraws into herself (which can be mistaken as a psychotic withdrawal): the tiredness is so important that the person gets unable to speak, to watch anything and even to think.
The second one is an emotional turmoil: after having tried too hard to manage many stimulations, the person will “explose” by screaming, crying and being violent towards objects, other people or, most of the times, themself. Many autistic adults got used to have their crises at home where they didn’t need to compensate anymore but sometimes they can happen in public which is even harder to accept.
Nonetheless, this is important to identify them and some helpful tools in order to prevent or calm down the crises. A precious strategy is called stimming which is the other name for stereotypies. Alistair made several videos about how important it was for an autistic person to stim in various circumstances. Indeed stimming can have several goals such as becoming calm, feeling the physical boundaries of the body and also expressing enjoyment. Stereotypies can lean only on body parts but also include objects offering specific types of stimulations (softness, relief, resistance, flexibility…). The person can also need to feel a frank pressure on their body, which can be helped by a weighted blanket. Nonetheless, let’s keep in mind that not all stereotypies are obvious for external people: “I scratch msyelf. Everyday. My hair, my face, my back. As a teenager, I could even make my back bleed. […] I clench my fists and put my thumb inside. I do it without even being aware of it: while walking, thinking, watching TV.” (Julie Dachez)
Another important activity for the balance of autistic people are restricted interests or, more appropriately called, specific interests. More than passions that anyone can experiment, specific interests can truly make sense in an autistic person’s life and integrate to their identity. You may have guessed it: autism is a subject of interest for each of the YouTubers mentioned here.
It’s important to precise it as some women tend to forbid themselves to spend enough time on their interests in order to compensate even more. Indeed the autistic person can spend their whole free time on this activity (e.g. increasing their knowledge about a subject or creating loads of contents) and even forget their physiological needs. That’s why they might also need routines which are actually common as they decrease unforeseen events that might cause anxiety as well:
“I have to pay attention not get into a vicious circle: whenever I’m too tired, I drag my feet for cooking properly. Eating less well makes my energy empty even more, I’m in the doldrums, wandering around like a lost soul, sleeping less well… I’m even more tired, starting on a Chocapic diet, spending more time watching TV, I feel lame, crying for nothing […] and I get exhausted, exhausted, exhausted.” (Julie Dachez)
Conclusion
This post (which is already too long) aimed to help you understand more about autistic adults experiment, needs and useful tools for answering them. If you want to keep discovering these aspects, I highly recommend Alistair’s, April’s and Julie’s YouTube channels which also address other linked subjects such as gender, work, other disabilities and coming-out about autism.
If you want to go further, you can also listen to several podcasts made by the GRAAF (GRoupe d’Action Autisme au Féminin) on their YouTube channel Les femmes autistes racontent. Themes discussed there include parenthood and addictions for example.
Thank you if you read me until the end. Remember that knowledge about autism keeps evolving within in the course of years: its definition could be pretty much different in the next 10 or 20 years. In the meantime, I hope this article might be useful for meeting some of your future clients!
By Joanna Yeung Lam Ko
References:
Alistair – H Paradoxæ. (n. d.). Playlists [YouTube channel]. Retrieved December 8, 2020, from https://www.youtube.com/c/HParadoxa/playlists?pbjreload=102
Dachez, J. (2018). Asperger. Émoi émoi émoi. http://emoiemoietmoi.over-blog.com/tag/asperger/
Dans les yeux d’April. (n. d.). Videos [YouTube channel]. Retrieved December 8, 2020, from https://www.youtube.com/channel/UCjXnR5UuyP5e3AaOslQeZJg/videos
Julie D. (n. d.). Videos [YouTube channel]. YouTube. Retrieved December 8, 2020, from https://www.youtube.com/channel/UCF-njLWFsgM97UGvScZqH4Q/videos
Les femmes autistes racontent. (n. d.). Videos [YouTube channel]. Retrieved December 8, 2020, from https://www.youtube.com/c/LesFemmesAutistesRacontent/videos
Noan. (2020, January 3). “La différence invisible” – Reconsidering others and the concept of normality. Psychology in English. http://blogspedago.univ-nantes.fr/psychologyinenglish/2020/01/03/la-difference-invisible-reconsidering-others-and-the-concept-of-normality/