Somewhere over the spectrum
My name is Courtney, I’m thirty-four years old and I have Autism Spectrum Disorder (ASD). I was late-diagnosed, at the age of thirty-three.
It had been a thought for a while; that I might fit the criteria for ASD, but I was too scared to delve any deeper. Due to, in part, the stigma associated with Autism being over-diagnosed.
It’s as if some people don’t understand the concepts of science, time and evolution
As we evolve, science evolves and we learn more and more about the human condition. For a long time, Autism was viewed as a condition that was only reserved for the most severe cases.
Given this, it’s understandable that one’s imagination might create an image of a child who is unable to communicate; they’re likely non-verbal and unable to interconnect socially. You may also envision an older person who has never been able to look after themselves, but who also has intellectual disability/s
Autism doesn’t have a face.
So, imagine what it might be like, when someone who has been diagnosed later in life – who has faced much adversity in their lives; finally finding a meaning behind their struggle – opens up about this, only to be met with:
You don’t look Autistic though. Yeah, so… you cannot see a brain disorder on a person’s face. Ok? Cool.
Nah, you don’t have Autism. I know what it looks like.
Oh awesome, when did you get your PhD? I’d love to learn more from you.
But you’re not non-verbal
Yes, I speak. What a wonderful observation. Autism is a spectrum
Oh, but we’re all a little bit autistic, aren’t we?
No. No we’re not. There are actually many organisations built on finding a cure for autism. Implying that we are all a little bit autistic, while it may not be your intention, actually minimises the profound mental struggles we have likely faced.
Our tone-of-voice is constantly policed and our facial expressions are relentlessly ridiculed with neurotypical expectations.
However, I do understand that the definition of Autism has evolved considerably in recent years. A lot of psychological research and discoveries have been made, not to mention the scientific advancements.
Most of the ASD community do not want scientific testing, because they believe the only reason for it, is to find a cure. Unfortunately, there are very few willing to help science in this way.
I do not share the same thought pattern.
I have joined many Facebook support groups and the like, in an attempt to help understand myself better, by being able to communicate with people like me, via shared experiences.
However, I’ve come to realise that although much of these groups are filled with late diagnosed adults; these people aren’t like me.
What I have found alarming is the amount of people in these groups who aren’t officially diagnosed. There are people infiltrating these spaces, who acknowledge they have not been diagnosed and refuse to be formally assessed, or whom are unable to be assessed [and] these same people are seeking or have sought, resources, like a disability pension.
It should be noted that to receive a diagnosis of ASD, the symptoms must have been present in early childhood. So, a lot of the time, if a person does not have access to a parent or guardian from that time then they are unable to be officially diagnosed. This is due to the need for the parent and/or guardian to complete rigid questionnaires, to assist in the overall diagnostic assessment.
In my instance, for the childhood diagnostic criteria, both my Mother and my Grandmother completed the questionnaires. My husband came with me, completing a questionnaire prior.
If I was that person; the person who didn’t have parents to help, I would be pushing for testing; scientific proof.
Because I agree, it’s not fair to the people who don’t have the support to be assessed. However, it’s absolutely nonsensical in my mind, to think that people can just self-diagnose and be supported by disability services.
It’s laughing in the face of how far we’ve come in understanding the full spectrum that is, Autism.
If there was a scientific method to test people for ASD, it could no longer be “over-diagnosed”.
I understand why people are scared of testing though. Because organisations like Autism Speaks are using the guise of “Early Intervention” to peddle Applied Behavioural Analysis (ABA) therapy. Don’t be fooled – while Early Intervention is important so that a child with ASD can be given the correct support to thrive in society and succeed in life – ABA is NOT the answer. This therapy is designed to make it so children silently struggle with their symptoms, so as to appear more neurotypical.
Think “Conversion Therapy” for Autistics.
It’s important not to use functioning labels, like “high-functioning” and “low-functioning” to describe a person on the spectrum. Well, at least not in an attempt to understand the specific challenges or capabilities of the individual you’re referring to.
In my opinion, it is because of these labels that ASD is misunderstood. As it is the idea of low-functioning Autism that stops a person from believing someone like me could be Autistic.
For some time, Asperger Syndrome (AS) was the term they would use to diagnose someone with high-functioning Autism.
And if I had been diagnosed as a child, it would have been Asperger’s.
It was first described in the 1940s by Viennese paediatrician Hans Asperger, who was a Nazi. He referred to children with Autism as “autistic psychopaths” and described them as “intelligent automata”, which is a fancy way of saying “intelligent robots”. The distinction of Asperger’s Syndrome was about their special abilities, so they were on the most favourable end of his defined “autistic range”.
There is some conjecture surrounding the reasoning he applied this diagnosis dissimilarity, however most agree that it was to protect the children with Asperger’s from Nazi eugenics. He cited that:
“less favourable cases” would “roam the streets” as adults, “grotesque and dilapidated.”
He sent autistic children to be euthanized, as they were deemed to be a detriment to the future “gene pool”.
A fact that remains solid; women are the most likely to have a late (adult) diagnosis.
For women, it is not uncommon to be diagnosed late in childhood, or a lot of the time, like in my case, as an adult. This is because of our ability to mask in social interactions where boys simply don’t or cannot. Women tend to acquire the skill of masking how they’re really thinking or feeling, because they’ve learnt at a very early age how to socially mimic their peers. They tend to know how they are meant to act, though not fully understanding why.
Girls might also seem to have less restricted and repetitive behaviours than boys. However, it’s plausible that some of these behaviours could go unrecognized.
For example, a young Autistic boy might have an obsession with trains or stamps or knowing the name of every single dinosaur. Whilst a young, undiagnosed Autistic girl could have an obsessive interest in collecting dolls, it’s more likely this would be viewed as a normal little girl behaviour.
As I’m sure you can appreciate, this level of masking, especially when you get to my age, can have detrimental effects on one’s mental health.
And in a later blog, I will delve a little deeper into that.
In some ways, the body and mind have been completely consumed by this, fake – if you will – 2.0 creation of ourselves.
I sought to be assessed due to the relentless issues I had with: regulating my emotions, meltdowns, shutdowns, self-destructiveness, suicidal thoughts, social interactions and the inability to sustain healthy relationships.
I learnt that the unyielding situational depression I suffered mercilessly throughout my life was actually Autistic Burnout.
This was caused by years and years of socially masking, so as to appear to fit in to the neurotypical society we live in, coupled with an overload of sensory stimulation in the brain.
When I experience this, it’s as if I can feel a switch being forced into the off position.
Did you know there have been studies indicating that people with Autism are thought to have too many synapses in the brain, due to a defective gene that influences how neurons connect and communicate with each other in the brain?
Yeah! it causes over stimulation in the brain.
[ more on that here: https://www.sciencedaily.com/releases/2017/11/171102131330.htm ]
It is central in the understanding of Autistic people to know that, as human beings, regardless of whether you are neurotypical or on the spectrum, we all share the same human emotions.
In accepting this, you understand that the symptoms that make up the criteria to diagnose a person with ASD can be felt by a neurotypical person also. The distinction lies in how those emotions are felt by a person on the spectrum.
I cannot speak for every single autistic person. However, in drawing from my own experiences, I can share how ASD affects my ability to regulate emotions in a positive way.
There are instances where I can’t control the way I react, emotionally. I cannot control the way my brain is interpreting and/or processing information received. Still, that’s not to say that I don’t have the ability to learn. I can absolutely acquire the skills to improve my emotional maturity. I’m doing so, every single day.
Let’s explore some of the differences of emotional regulation in Autistic people:
We might find it difficult to communicate non-verbally.
We likely have specific interests that consume us.
It’s very challenging to make eye contact.
It’s hard to match how we’re actually feeling on the inside with our facial expressions, thus sometimes coming across as a bitch, who is being intentionally rude
When a person is venting to us, we might be inclined to help relate to you by sharing our own similar stories. [Much, to many a person’s frustrated dismay].
When a person is sad, we might be inclined to help fix the reasons behind why they’re sad, rather than comfort them.
Change can be a huge barrier for us. Any form of change. This might make us seem unreasonable or unwilling to make compromises.
We tend to have a strong sense for justice
It’s tough for us to see the grey; we have a habit of black and white thinking
It goes far beyond the run-of-the-mill discomfort that neurotypical people experience.
And none of this is to say that the negative symptoms experienced by being on the spectrum are ok, especially not if they’re hurting somebody. What I have come to realise is that, just because I didn’t intend to hurt someone, doesn’t mean it didn’t happen. And it’s ok to apologise for your shortcomings, regardless of whether you can help it or not. Regardless of whether the reason you responded the way you did was because of your Autistic brain; because no, we can’t help it. But, we can apologise when we’ve caused a problem as a result of it.
I have found since engaging in the aforementioned Facebook groups, a lot of Autistics don’t want to fight for their lives. They want to use their diagnosis as their reason for not being able to succeed.
And they wanted everyone in the group/s to agree with them; to think like them.
And they were almost successful.
I almost believed that I would never prosper in life as a direct result of being Autistic.
But I have husband that called me out on it. He saw me using it, even if, somewhat unconsciously – he saw it – and was worried and we had a discussion about it.
And then I saw it too.
Luckily, I was able to pull myself out of that hole.
As part of the Autism diagnosis, I suffer with Rejection Sensitive Dysphoria.
I have intensely strong emotional reactions to negative judgements, perceived exclusion and the feeling of constantly being criticized, that it honestly seems like I believe I’m above reproach. And in those moments, I feel that craziness and I don’t like it.
Interestingly, social rejection activates the same parts of the brain as physical pain does, and the experience of each can have many similarities on a brain scan.
Part of the difference in how we take in and process information also affects the brain’s ability to cope with sensory variances, in each individual.
For most people, processing sensory information isn’t a problem.
Sensory Processing issues can be a huge component when dealing with a person or child on the spectrum.
You’ll find that there are Sensory Seeking individuals and Sensory Avoiders. A seeker underacts to sensory input, therefore needing more of it. Whereas, an avoider might overreact or become extremely overwhelmed to sensory input; thus requiring much less of it.
[ for a better understanding: https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/sensory-seeking-and-sensory-avoiding-what-you-need-to-know ]
When we’re thinking about Sensory Input, we are thinking about: Sight, Smell, Hearing, Touch & Taste. Therefore, while thinking about these words, it shouldn’t be too hard to realise how Sensory Input would be largely different between a “Seeker” and an “Avoider”. With some people it’s a combination of the two, depending on which input we’re referring to.
I’ll use myself as an example.
I find that I’m mostly a Sensory Avoider. But, I do also seek in some circumstances.
Sound is a huge Sensory Input issue for me [and] also a little confusing because I both seek and avoid.
When there’s a sound outside somewhere that I have no control over; birds chirping, a school bell buzzing, a persistent car horn or a myriad of other sounds that we could come up with, it sends a shock through my body.
Literally, I feel as though someone has taken away my right to feel that reaction in a positive way. It affects my brain negatively and I hate it. Because, while I can apologise for my reaction – if it has impacted another person in a negative way – I can’t change the way my brain reacts to it.
So I will avoid sound in those instances. The only time I ever seek sound, at least that I can think of right now, is to turn up the TV. That’s normally due to the fact, though, that there are a lot of other sounds happening in unison.
Most likely, there will be a conversation happening in the same room and my inability to be able to separate hearing that conversation whilst also watching and understanding what I’m viewing on TV, becomes quite problematic.
I’ve only realised recently how much the Sensory Input of hearing affects me. People often tell me that I don’t actively listen in a conversation, because I’ll normally either dominate it or ask questions for which the answers have already been shared.
This is rarely because I haven’t been listening.
I’m always listening.
My husband and I met up with some friends of ours, who are a couple, at a loud & noisy bar recently and we we’re having our own separate conversations at the same table. Whilst I was trying to listen to my friend – like – very intently, my ears were hearing this whole other conversation my husband was having and I missed half of what my friend was telling me.
Touch is probably the one that affects me the most. Whilst I enjoy intimate affection and often cuddle with my husband; previous partners didn’t get to experience that from me. And whilst I love cuddles with my niece and nephews, I readily avoid experiencing a hug with another person. Much like the issue with sound, it sends a shock right through me; I feel like I jump out of my skin. Though, I feel it’s important to mention that if I sense like I’m in control of the hug – if I feel like I have the capacity to give that hug – then I’ll approach you and I will hug you.
So while I’m highly avoidant to touch, I also seek it in other ways. For example; I have a 9kg weighted blanket, which I use all the time. It creates a comfort for me that I can’t find from another human being, though in the same breath sometimes isn’t enough [and] in those moments I will seek hugs and comfort and human touch, albeit rare.
Look, I could sit here for pages and pages of how Autism has affected me. But that was never the point of this exercise.
This is to introduce you; to create a heightened awareness of Autism Spectrum Disorder.
THIS IS A CALL TO ACTION.
To understand that we are not all neurotypical and that we can find other ways to communicate when it isn’t possible to do so verbally.