I was in my late 20s when I first seriously considered that I might be dyspraxic. For much of my life, I had wondered if there was something wrong with me that would explain my general lack of coordination, but I didn’t know what that something might be.
When I read about and learned about dyspraxia, a bubble of hope sprung up inside me. Could this be the thing, the answer, the reason? Could it be possible that I wasn’t making something out of nothing?
Getting assessed wasn’t a possibility for me at the time – not unless I could find hundreds of pounds to fund it. My university didn’t help with dyspraxia assessments.
Truthfully, even if I could have gotten an assessment, I was a bit too scared to have gone through with it. What if I got assessed and was told it was all in my head? That there wasn’t a reason I was struggling, that I really was just lazy? Working in mental health, a fair number of people come to the service explaining that they think they have a particular diagnosis; and although I can usually understand how they have reached that conclusion, sometimes another label and/or treatment approach might make more sense with what they actually describe experiencing. So I was very cautious about self-diagnosing dyspraxia. I know that self-diagnosis is not always accutate (although, equally, it absolutely can be accurate and can be an important step towards accessing appropriate services and support, whether it is accurate or not!).*
But over the next couple of years, the idea just wouldn’t go away. Eventually, I checked back with my university and – amazingly – there had been a change. They would now offer an assessment for dyspraxia.
Nervous, even frightened, but also excited, I jumped at the chance.
Why did I want an assessment?
- To answer my question – was I dyspraxic?
- Validation – to know I wasn’t making up all these difficulties, that I really did struggle more than might be expected
- Self-understanding – to be able to know myself better
- Potential support and adjustments – I didn’t really know what support or adjustments might be available or helpful, or what it would be reasonable to ask for
- Potential to learn coping strategies
- To be able to explain my struggles better to others
- To make sense of past experiences
In particular, I was really struggling at university. Not so much with any particular element – if you only saw me on placement, or in class, for example, you’d be forgiven for thinking everything was fine. But trying to shovel the amount of information I needed to learn into my brain, trying to process that and be able to apply it on placement, alongside juggling 2 placements, lectures, assignments, reading and my thesis, as well as needing to work during the holidays? I felt like I was always running, never on top of things, never fast enough. I felt really stupid and incompetent, despite the positive feedback from my supervisors. I took breaks from choir so that I wasn’t always travelling, which helped me have more energy but also meant I lost a form of stress relief. I reduced how many hours I worked (paid work) during the holidays – but that meant I had more financial worries. I tried so, so hard to pace myself – but I couldn’t find a pace that genuinely worked both for my coursework and for my energy levels and wellbeing. I was permanently exhausted, and increasing amounts of my mental energy were going on weighing up whether to even continue. Maybe I was just never meant to qualify. Maybe my career goals were too ambitious – it wouldn’t be the first time I’d aimed for something outside my ability to achieve.
I needed to know. Was I dyspraxic? And if so, what might help? Or was I clutching at straws, hoping for a reason, when in reality I just wasn’t cut out to do a professional doctorate?
It sounds like it felt really important to you. Are those the main reasons people seek assessment?
It was. Different people will seek a diagnostic assessment for different reasons. They might hope that a diagnosis will help improve their relationships or mental health, for example. There might be lots of overlap with my reasons, or their reasons might be quite different. That doesn’t make them any less important than mine were.
Some people will be happy with self-diagnosing or with suspecting they have dyspraxia, and not feel the need for an official diagnosis. Unfortunately, especially for adults, it’s hard to get an assessment – unless you’re rich enough to pay. Often universities can fund or part-fund assessments, and some employers may also be willing to help, but not everyone can be in university or lucky enough to have an employer prepared to fork out the cash. I’m very conscious that a certain amount of privilege in my life was necessary for me to access diagnosis, and it’s deeply unfair that some who would like an assessment don’t have the same opportunities that I did to access one.
If some people are happy without a diagnosis, does diagnosis really matter?
I would say a big yes to this. Partly this is based on my own experiences and the impact having a diagnosis has had on my life – I’ll be posting a follow-up blog about that later this week, but (spoiler alert) the impact has been greater than I ever anticipated and I’m incredibly glad I swallowed my fear and sought an assessment while I could.
The Dyspraxia Foundation also recently released findings from a survey of their adult members which support the importance of diagnosis. I won’t repeat all the findings – you can read them on the Dyspraxia Foundation website here – but, of those who had been diagnosed:
- 71% were relieved by this
- 52% reported a positive impact on their mental health
- 52% reported a positive impact in terms of activities of daily life
- 36% reported a positive impact of family relationships
Of those who had not been diagnosed:
- Over half considered that not being formally diagnosed had a negative impact on education or career progression
- Over two-thirds reported that not being diagnosed negatively impacted on their relationships, mental health and everyday life.
To me, that’s a pretty clear message – diagnosis matters, even in adulthood.
I think I or my child might be dyspraxic, how can I arrange an assessment?
I’ll be posting later this week about how I approached getting an assessment, the process and things I found helped, so keep an eye out for that. In the meantime:
- Contact your GP (be aware that the extent to which people have found their GP helpful has varied greatly)
- If you are at university, contact your Student Support service, ask your personal tutor or contact your university Disability Team or Neurodiversity Team
- If you are employed, consider whether you would want to ask your employer or union for support/advice
- Contact the Dyspraxia Foundation Helpline.
- Start gathering supporting evidence – for example, this questionnaire is a screener questionnaire for possible dyspraxia.
I hope you’ll check back later in the week for my posts about my experience of the assessment process via my university and about the impact of my diagnosis on my life. And whether you decide to pursue an assessment, are not in a position to pursue an assessment, don’t have access to appropriate assessment, or decide you don’t wish to get assessed – remember that you are not alone, you are not lazy, and that dyspraxia comes with important strengths alongside the struggles.
*This does NOT mean that self-diagnoses are always wrong, sometimes people are absolutely spot on with their self-diagnoses. I am just saying that because I know self-diagnosis is not foolproof, I personally felt too anxious about getting it wrong to self-diagnose.