Hi and welcome to today’s blog post.
As some of my Practical Steps to Blogging workshop attendees have asked me to publish their blogs in full on my blog post, I thought I’d do what I do with my guest posts and share them as such – guest posts!
I’ll be adding links to Helen’s lovely website throughout so you can get in touch with her, and follow her blog directly from her website as well!
I hope you enjoy this blog post she’s written, I know I have!
‘to diagnose or not to diagnose – that is the question’
When I became aware that Shula was ‘different’ my instinct was to ask for professionals to assess and to explore.
This could be because I am from a medical background, or because she was not terribly happy much of the time, and definitely because I felt out of my depth as a parent having felt pretty competent with my first two.
I often felt chastened by what I perceived as others’ more unconditional acceptance of her as a being. Her lovely nursery didn’t raise any issues (despite her struggle with wearing clothes and interacting with peers) and were great at supporting her being her.
Her dad was worried that a diagnosis would limit her – that she would be seen as ‘autism first’, ‘Shula second’.
There was also a sense that I could be ‘making a mountain out of a molehill’ -especially as some of her challenges were more subtle, and she rarely presented as ‘typically autistic’.
And yet my instinct parenting her closely as a full-time mum – backed up by my professional experience of working with families – eventually led us to seeking assessment.
My educated guess was that she was on the autistic spectrum, and my fear was that I’d be letting her down if I didn’t explore that option – even if only to rule it out.
My view was that if I was wrong then there would be no harm done and I would be able to adjust my perceptions accordingly (after perhaps eating a bit of humble pie).
I so wanted to be the mum she needed me to be. If she had a neurodevelopmental difference, I wanted to know.
If she didn’t – I would improve my parenting according to how she presented as an individual, without so much wondering about:
‘is it? isn’t it?… something seems amiss…but maybe I’m just a judgy bad mum who isn’t unconditionally accepting her child’.
Too much ‘beating myself up’ or ‘ruminating’ like this isn’t good for anyone -and could definitely undermine my capacity to enjoy her to the full or make the best of my strengths as a parent.
She was diagnosed with ‘childhood autism’, later changed to ‘Asperger’s Syndrome’ which now officially doesn’t exist as a diagnosis any more. This can be another reason for resisting ‘labelling’ a child – the field is constantly evolving and changing – and how much do ‘experts’ really know anyway?
For me – and I believe for Shula – it was a gamechanger.
As well as shock, fear, and grief, I felt that I had ‘seen’ her and had started my journey of understanding her better.
I read books, went on courses, and adapted my expectations and parenting according to my developing knowledge and skillset.
I became more able to see her amazing strengths and more able to accept the parenting challenges she presented to me.
I felt ‘lighter’ and brought more humour to our interactions.
I felt less inadequate.
I became more compassionate to her and to myself.
I learned so much from her and I learned more about myself, about neurotypical assumptions, and about diversity.
Supporting parents to understand, support and enjoy their children is a key part of my work and my passion.
I believe the right diagnosis can be incredibly helpful in this process.
It may be too obvious to state that the wrong diagnosis is not helpful.
Just because a child is different, challenging, or not what we expected doesn’t mean there is ‘something wrong’ or they have a diagnosable condition.
Looking at ourselves as parents is key – we need to work hard to be receptive to our children’s individuality, challenge our assumptions, and be willing to adapt our relating according to their needs.
Many of the children I work with have complex developmental trauma, and the autistic-type or adhd-type traits they present with can be more ‘nurture’ than ‘nature’.
Skilful exploration is needed to see if assessment for a comorbid neurodevelopmental condition would be helpful or not.
When children do have a condition such as autism or adhd, as we currently understand them, my belief and experience is that assessment and subsequent diagnosis can be incredibly helpful.
A label can have many benefits including:
- signposting better ways to meet the child’s needs
- being a ‘shortcut’ communication to others – we should all be thoughtful and kind to everybody – but sometimes it helps us to be accepting if we understand a little of why someone might be struggling
- helping a child and their family access crucial services – such as additional support at school
- supporting the individual to understand themselves in a more compassionate way – ‘oh…I have Asperger’s – that’s why some things are so hard for me – I’m not just wrong’ and help them ‘voice’ their needs to others
- introducing us to communities of other families who are having some similar experiences and we can feel less alone and more connected
- putting us in touch with professionals who can offer crucial input advice and advocacy
- meaning that a child gets appropriate support and intervention earlier rather than later which research shows leads to more positive outcomes
- being a positive part of a young person’s identity
My advice, therefore, would be – keep an open mind.
I firmly believe that I am closer to Shula, enjoy her more, support her better, have more fun with her, and respect her difference more than if we hadn’t sought diagnosis.
At 15, I am so proud of who she is as a young person.
This is enhanced by my strong understanding of how hard life can be for her sometimes.
I asked Shula to read this blog and comment –
Love it! I think it’s amazing Mum.
I asked for her opinion on having a diagnosis/label:
‘Being diagnosed with autism has definitely helped me a lot, if it wasn’t for my amazing mother my life would be very very different and a lot worse.’
Well I wasn’t expecting quite such glowing praise but am impressed by the social skills and very touched by the sentiment!
I recently attended my first Cork Autism Conference – on Zoom.
In a future post I will be reflecting on developments in the field of autism and my new learnings.
Don’t forget to sign up to Helen’s blog via this link, and mine via the form below: