How Could I Have Missed she had Autism or Asperger’s?
Elizabeth has always struggled with social interactions. She likes her own company and struggled with social norms and expectations with peer groups. Panic attacks before and during school were frequent. She can’t talk on the phone to anyone she does not know, couldn’t order a take away or speak to a medical professional. She will answer people what she thinks is the right answer, that they want to hear. She assumes people don’t like her and imagines their negative thoughts about her.
She is just Elizabeth, we never felt the need to put a label on it. She was always very mature for her age and highly intelligent. By age three she was asking me why blood is red but veins are blue, why food is all colours but poo is brown. Her brain was working none stop at wanting to know everything. She was evidence driven and always wanted proof, statistics and facts.
Since becoming ill and struggling with symptoms of an unknown illness which we now know is Myalgic Encephalomyelitis we needed to address her educational needs. She was so poorly that for a few months she didn’t leave her bed and for almost 2 years didn’t leave the house other than for medical appointments. To get her back into education we needed reasonable adjustments to be made to meet her new needs. So while talking to a special educational needs and disabilities (SEND) legal advisor re gaining an EHCP for my daughter she went through her early development up till she became chronically ill recently and she asked when she had been diagnosed with Asperger’s.
The ground could have opened up and swallowed me whole. She hadn’t been diagnosed with Asperger’s or any form of Autism and it hadn’t entered my head. I had a 30 year old son with significant Autism and have worked supporting and teaching others with and about Autism for 20+ years – how could I not know my daughter was on the spectrum?
I quickly learned that female gender specific Asperger’s is very different in presentation to Male and is often diagnosed in late teens early twenties rather than primary school age. (So much for early intervention being the key to good outcomes}
So I researched female gender specific Asperger’s and everything made sense – my daughter could have been the poster child for an awareness campaign. All her social anxiety and paranoia was explained by her having Asperger’s. So despite almost 2 years with CAMHS they only saw the anxiety and medicated her for it – which in turn in my opinion caused Trichotillomania and a life threatening reaction to the Fluoxetine (SSRi Antidepressant) resulting in Myalgic Encephalomyelitis.
We sat together, me and my daughter and researched as much as we could to understand the condition and at first she was very resistant to a label and kept saying how she wasn’t like her brother. David’s Autism presents very differently and is very disabling and means he needs 1:1 care and support 24 hours a day, every day. (I do have issues with the broadness of the Autistic Spectrum – its almost as ambiguous as the Chronic Fatigue Syndrome Umbrella). After a couple of days she felt a comfort knowing there was a reason for all her struggles and why she felt the way she did. She embraced the Autism diagnosis and seemed to have a weight lifted off her shoulders.
Online I found an amazing ‘Unofficial Female Gender Specific Asperger’s check list’.
My daughter went through this list and identified with 144 out of 167 character traits and was able to give examples of how each fit into her life. It was like opening up the answer to a 14 year puzzle. It explained all of her social development deficits and her intellectual development over achievements.
So now we needed to get a diagnosis confirmed. She was already under CAMHS so in February 2019 I called and spoke to her psychiatrist who said he had thought she was on the spectrum previously but discussing it with colleagues he had dismissed it but now I was raising it he was again pretty confident she had Asperger’s. He would arrange an ADOS assessment and write to school for their comments and asked me to provide a developmental profile. So the upshot of it is she was diagnosed with Autism in May 2019. We self referred to the local SALT for a speech and language assessment which confirmed her struggles with emotional language.
Almost immediately after the diagnosis Elizabeth said she felt able to be herself. she stopped masking at home and it became obvious that she had huge unmet sensory needs that she had tried to cope with and overcome herself. She started fiddling with things, messing with her hands, I hadn’t realised how often she had sat on her hands in the past, this was how she had managed with her need to stim.
WHAT IS MASKING = Masking is where a person with Autism consciously while trying to fit in with neuro typical peers and will hide behaviours they think will be socially unacceptable or noticeable and mimic behaviours and social norms that they see others doing but don’t come naturally to them. This masking takes time, effort, energy and is exhausting and draining. Often an Autistic child is so focused on masking at school that when they come home, and can drop the masking they can come across as angry, emotional, ‘non compliant’ aggressive and frustrated. Professionals often mis interpret this as there being a problem at home. Often undiagnosed autistic people mask all their waking hours. Masking is a series of learned behaviours, used as a defence against appearing different.
WHAT IS STIMMING = Stimming is a self soothing or sensory controlling behaviour that helps a person with Autism cope with their environment. It can be in the form of repetitive body movements or repetitive use of an object. In recent years fidget toys have become popular as a way to have ‘socially accepted’ stims.
Elizabeth still struggles with the social side of life and while she is happy to engage in a one on one deep and meaningful intellectual conversation with an adult she knows well, she struggles to even say hello to a peer. She has no ‘friends’ at school and struggles to understand social interactions where people are nice to others to their face then talk bad about them to other people. She wont interrupt or interject in a conversation and so struggles to know when it is ‘her turn to speak’ so finds it easier not to engage in unnecessary conversation. She has a couple of people she messages with by text, WhatsApp and email, but the thought of a telephone conversation or actually meeting up with them still terrifies her. She cant cope with crowds, and has panic attacks when trying to manage every day things in a public space, like going to a shop, or the cinema. Elizabeth has never been on a bus, the thought of it terrifies her. She hates to make eye contact and it turns out all her life she has focused on a one inch square on peoples foreheads, right above and between the eyebrows. I’d never noticed. She struggles with bright lights, echo noises, high pitched voices, strong smells and ‘people noises’ like chewing, yawning loudly, sniffing, coughing, clearing your throat. It distracts her from processing normal thoughts and so had all her school life made it increasingly difficult to concentrate. Before the diagnosis she thought everyone struggled this way.
We have had lots of long conversations about her Masking and Coping mechanisms and how they actually increase her anxiety. She overthinks every interaction with people. She never just speaks, she thinks about how the other person might receive or interpret what she is saying, so she has several explanations for what’s she has said already thought out depending on their response to the initial sentence. This must be an incredibly exhausting way to communicate and so I can see why she chooses not to speak to people she is not comfortable with.
Elizabeth took an online test to look at how Autism affects her – the diagram at the top of this blog shows her results – its from this site: Obviously this isn’t a diagnostic tool but still very interesting.