Some thoughts on diagnosis

Earlier this month, I was diagnosed with dyspraxia. Although talking about it leaves me feeling a little vulnerable – after all, the basis for my diagnosis goes to the heart of all the areas where I have secretly felt inadequate for years – I want to share my experience. I think it might be useful to parents out there who may be coming to terms with their child’s diagnosis or thinking about whether their child may have additional needs.

For many years, I have felt like there were lots of day to day situations which I struggled with that other people seemed to find straightforward. Operating coffee machines, knowing left from right, using car-park ticket machines, opening train doors, understanding new road layouts, not getting lost ALL THE TIME (including in the building I have had an office in for three years…) shall I go on? Basically, I find so many situations hard and watch other people navigating their way around the world apparently seamlessly, while I push on the pull door.

My work in feeding (and counselling children and young people before that) has given me insights into to all sorts of related areas, including dyspraxia. When I first came across it, I thought “that’s me!” but it’s taken me until my forties to pluck up the courage to actually go and get assessed. When I read my report I felt a huge sense of relief that was hard to pin down. In part, I think it was because I had evidence that I had not been imagining things. It was something else though too – an insight into my brain that I really, really needed.

For example, I have a huge problem with slip roads (I have written about this before!) When I have attempted to explain this to people, I’ve tried SO hard to convey that it isn’t just a lack of confidence and that  I simply can’t process what I’m seeing quickly enough to make a safe decision. To see written in black and white that my visual/spatial processing speed is on the 6th centile (that’s low, people…) was huge for me, because it helped me see that my intuition was correct. I literally can’t make driving decisions at speed. Me trying to join a motorway is equivalent to you pulling out in the middle of a formula one race where everyone is doing 200 miles per hour.

 

Which diagnoses may relate to eating?

This is not an exhaustive list, but there are several diagnoses which may be relevant to parents of children with feeding challenges.

Autism is strongly associated with feeding problems (not all avoidant eaters are autistic but approximately 80% of children on the autism spectrum have an issue with food and 95% are resistant to trying new foods*. Read my article for Autism Parenting Magazine to learn more about why this might be.

Sensory Processing Disorder (SPD) is not a label universally used (it is not included in the current manual used by clinicians, the DSM-5) but is often applied to children who find sensory processing very hard. Sensory processing challenges are strongly linked to selective eating and children with a sensory basis to their food avoidance may need specialist help from an occupational therapist.

Research also shows that Attention Deficit Hyperactivity Disorder (ADHD) can be linked to sensory processing problems, as can dyspraxia. Personally, I have a degree of auditory sensitivity… don’t talk to me when I’m tired and the TV is on, and especially never eat with a fork and a china bowl near me because that high-frequency scraping sound drives me to distraction!

Finally, Avoidant Restrictive Food Intake Disorder (ARFID) –  a new diagnosis for extremely limited eating that does not fit with anorexia nervosa –  is included in the DSM-5. This is still relatively recent (published in 2013) so many parents and professionals have not heard of it yet. Read my article on ARFID if it is new to you and you’d like to learn more.

 

The pros

If your child gets a diagnosis, this can help you understand and support them. It can help them understand themselves too. Importantly, it can open the door to specialist help which may otherwise be hard to come by. Equally, if your child is assessed and found not to merit a diagnosis, this can be useful to know too.

 

The cons

Our medical system is fallible and is just our crude attempt at categorising some of the wonderful diversity humanity has to offer. Just look at how being gay was seen to be a psychiatric disorder in the past – this illustrates the fact that our attempts at understanding ourselves are flawed and we are always learning. In other words, it is an imperfect system. Plus, some people feel that a diagnosis is a way of labelling a child that can be limiting.

 

What to do?

This is such a personal decision. If you are weighing up whether to get your child an assessment – perhaps because you think they may not be neurotypical or may have additional needs – only you know what is right for your family. As long as you have your child’s needs at the centre of all your decision making, you will get it right.

For me, my diagnosis has been liberating and has helped me see that I’m not stupid, my brain is just better at some things than others!

*Cormack, J. (2016) Helping Children Develop a Positive Relationship With Food, Jessica Kingsley Publishers