It's not a label, it's a puzzle piece: one child's autism diagnosis and why it matters
A parent and child perspective on the choice to seek an autism diagnosis and how it's changed everything for the better
This is the third article I have written with my 11-year old daughter about her (our) experiences of autism. The first was about masking and the second about school anxiety. The response to those articles has made me realise how many families are navigating these waters and seeking to understand more. Something I’m asked about often is her diagnosis. Why did we decide to seek one, how did we go about it, and is it a good thing to do? Here, we answer those questions, sharing as always our individual perspectives as parent and child, neurotypical and Autistic.
I first considered the idea that Megan may be Autistic when she was three. A few friends were over with children the same age and, as I watched them playing, it struck me again that something was a bit ‘off’. Megan seemed to play alongside other children, mimicking them instead of playing with them as they seemed to each other. As she got a bit older, I noticed on playdates that her persona would morph into that of the other child. She’d be swept along with their interests, energy, and desires and the little girl I knew all but disappeared for a few hours.
There were other signs. Her need for routine, her desire to be ‘good’, her fussiness about clothes, her reading her way through the Famous Five series before she was six. I’d often describe her as ‘kooky’ but she was just ‘our Meg’. And she was very happy.
Until she wasn’t.
The path to diagnosis
Megan turned eight towards the end of 2020. The year ahead was going to be a turbulent one. She became increasingly anxious and upset about school and spent a significant amount of time every evening and morning in tears, worrying about the next school day. Numerous people assured me it was COVID-related anxiety. “Very common now,” they’d tell me. “She’ll get over it soon.” But of course she didn’t, because that wasn’t the reason.
It was clear the social dynamics at school were getting more challenging for her. She didn’t seem to ‘get’ the nuances of the playground interactions, and would report the happenings to me from the perspective of interested observer rather than participant. She’d be perplexed that someone who had promised to keep a secret then didn’t, and confused by the constantly shifting allyships. She clung to one special friendship and was upset when the intensity wasn’t always reciprocated.
In short, her being ‘kooky’ was starting to cause her problems.
I began to research autism presentation in girls. So much of what I read seemed to fit. I began to gently test some of the concepts with Megan. We were chatting in the kitchen whilst I was preparing dinner one day, and it felt opportune to ask her,
“Meg, do you feel similar to your friends or different?”
She immediately burst into tears. She felt very different, but she couldn’t explain why.
I later bought her a book: I am an Aspie Girl, by Danuta Bulhak-Paterson. It’s a short story about a girl called Lizzie, who ‘has a special talent for blending in with her friends, gets really tired after being at school all day, worries about making mistakes, and finds it hard to understand how she is feeling’. Megan was sat on her bed when I gave it to her to read, without comment. I busied myself tidying her room and waited for her response.
“I wish Lizzie was a real girl because she’s just like me and we could be friends.”
I didn’t say a word. The silence felt long.
“Mummy…why did you buy me this book? Do you think I might be an Aspie Girl too?”
She doesn’t miss a trick. I answered carefully.
“Perhaps. I don’t know. I was interested to find out how you felt about it”.
And so began our months-long discussion about whether to pursue a diagnosis.
Should I put a label on my child?
This was my biggest worry. I had come to understand more about the varied presentations of autism, but I couldn’t expect that others would have developed the same perspective. For many, I imagined the label ‘Autistic’ would conjure a socially awkward, emotionally repressed, maths whizz. That wasn’t helpful.
What if the label just led to preconceptions and misplaced generalisations? What if people started to see the label and not her? I felt increasingly protective.
I needed some guidance and so turned to a community I had come to value immensely. The Autistic Girls Network Facebook Group contains thousands of women who had lived experience I could draw on. I asked them what ‘..we should consider before heading down a diagnosis route? Any reasons not to? Reasons to wait? Things to be aware of?’. I received 59 responses with a very consistent message.
Do not wait. You cannot thrive in this world until you understand yourself - trust me, as a late diagnosed autistic. I flailed around in life with severe mental health problems until the age of 35 because I simply didn't understand myself. My best advice to you is get her assessed ASAP.
It was a strong nudge down the diagnosis route, but I still had anxieties. Ultimately, it was Megan who pushed me past them.
Before I knew I was autistic, everything felt a lot harder. No one really knew what to do if I was anxious, stressed or overwhelmed. If I felt overwhelmed at school, I didn’t really get much help. I felt stressed nearly all the time and didn’t really understand why. I remember when my parents told me about autism and asked if I wanted to find out more about it. They gave me some books to read; the more I read about it, the more I thought I was autistic. I personally wanted a diagnosis because I thought that everything would make more sense. In my head, I imagined my life as a bit of a puzzle - if I found out whether I was autistic or not it would be like slotting in another piece.
I don’t suppose I will ever forget the face of the 8-year-old child who fixed my gaze and said with slight exasperation,
Mummy. I think you just need to see me as a puzzle. At the moment a piece of that puzzle is missing, and if I find out I’m autistic then it will be like finding it.
Righto then kid. Assessment it is.
Understanding ADOS, DISCO, WISC and other things
We were incredibly fortunate that we could afford to pay for Megan’s assessment. I contacted a centre that was recommended to us in June 2021, her assessment was completed in the September, and we received her diagnosis in October. It cost just over £2k. I was advised at the time that, had we not been able to pay, the wait list was around 4 years. The inequity of this causes me considerable angst, and the only consolation I find is that in paying for her, we left an appointment free for someone else.
We chose the centre we did because they offered two different ASD assessments. The Autism Diagnostic Observation Schedule (ADOS) is the more commonly used assessment but, we were warned, it’s not as reliable for assessing the classic female presentation. The Diagnostic Interview for Social and Communication Disorders (DISCO) is apparently better. This centre did both, and the Wechsler Intelligence Scale for Children (WISC) for good measure. If you are wanting to learn more about this, there are better places to seek information - The National Autistic Society and The Autistic Girls Network are great resources.
I was concerned about Megan going through the assessments, but the staff were fantastic and made her feel at ease.
I remember some parts of my assessment really well. My parents got taken into another room and I was left in one with someone. She got an ipad out and I had to answer questions on that. After, she said loads of number sequences and I had to remember them and repeat them. I was a bit nervous but I was excited to be doing it. The waiting for the results was more nerve-wracking than the assessment.
A piece of a puzzle, sent by email
It wasn’t a surprise, but it was an emotional moment to see it written down:
Megan meets criteria for Autism Spectrum Disorder (ASD).
I felt a sadness about the permanence of it. This wasn’t a transient thing, it was a forever thing. I didn’t want her to face challenges forever. I just wanted to be able to fix it all. I don’t mean her - she was exactly as she should be. I wanted to fix the world so it wasn’t so tough for her.
But for Megan, this was the puzzle piece she had been hoping for.
I actually really wanted to find out that I had autism because it would make things easier to understand. I was in my room when both my parents came in and told me that I had autism. Personally, I was really happy - though a little nervous.
At first, I felt like a label was attached to me. But that feeling disappeared really quickly. I was nervous about telling people but now I feel more confident. I have found that knowing I have autism has really helped me. Everyone was very understanding and it meant that they all could help me if I was struggling. Also, I now understand myself really well; I know what to do if I feel overwhelmed and what to do to prevent it. Overall, I am really happy I got my diagnosis because it changed my life (in a good way) a lot.
She was right, of course. It has changed everything for the better. Not instantly by any stretch. But gradually, over months and months of learning, and experimentation, and iteration. Her anxieties have lessened, she’s developed new friendships, there are more happy days.
I agree with her that better understanding is at the root of it all.
She better understands herself, and I sense she no longer feels different. She has read many books, fiction and non-fiction, and has developed a broad understanding of autism. She knows she’s not alone but a member of a wonderful community. I see her embracing her individuality more authentically and confidently.
The adults in her life are better educated and able to understand how to support her. Knowing she is Autistic means we can seek the voices of Autistic adults who provide insight and practical suggestions. We can help her better manage the things she finds tough, at home and at school.
This doesn’t mean there aren’t still challenges. But I guess when you can see the full picture, you aren’t fumbling around in the dark.
So, it’s a ‘yes’ from us
In truth, there have been times we have told someone Meg is Autistic and I’ve come to wish we hadn’t. Some people don’t understand and think her less capable than she is. I find myself evaluating situations and people, trying to assess whether giving them this slice of information will help or hinder her.
But this is minor. And the benefits that have come from understanding are major. There are many paths our lives could have taken these past four years, and the one that led us to preparing her for mainstream secondary school wasn’t even visible to me back then.
Her diagnosis lies at the heart of that.
I don’t even think of it as a label now. It doesn’t define who she is. It’s just an important piece of the puzzle.