Considering A Late Diagnosis for Dyspraxia | Ivan Lewis - UK
Ever since I can remember, I have had problems with my physical co-ordination - actions like catching a ball and writing legibly were always extremely difficult. Over 40 years I have grappled with other issues like social anxiety in large gatherings; the effort to fit in with peers; problems multitasking; sensory overload and more recently multitasking. At the age of 46, I was ready to investigate what I came to realise was an underlying neurodivergent condition - something I could not easily ignore.
For a middle-aged adult researching possible options, the process can seem very confusing at first. After all, the standard guidance tends to focus predominantly on children whereas for adults, it’s not as straight forward but be reassured, late diagnosis is not impossible. Although access to a relevant assessment for those over 18s has slightly improved over the years, this appears less evident for those in middle age and upwards who have struggled with dyspraxia for far too long. Across the UK coverage is still patchy but it exists. However, dyspraxia is a lifelong condition and eventually the child turns into an adult who may well be just as vulnerable.
Nevertheless, in 2017 I was determined to take a full set of diagnostic tests with an occupational therapist through ‘Dyspraxia UK’ who were experienced enough to diagnose DCD and in the fullness of time confirmed my suspicions, which to be honest came as a big relief.
So why seek a diagnosis at such a late stage in life? There are three positives I can share with you which certainly made my search worth the trouble.
- On a personal note, many of the issues I had faced since childhood were explained. With a diagnosis, mental health can improve if you are kinder with yourself, especially when dyspraxia is making the day a more challenging one. Also, the revelation does tend to boost self-confidence. I can now celebrate my achievements safe in the knowledge I had without knowing it, navigated around my symptoms not needing to give up on any of my professional goals or give up on a particular hobby. Throughout the diagnosis, one learns how to reinforce the more positive traits associated with dyspraxia like creativity, loyalty, determination and problem solving.
- In certain cases, dyspraxia is considered as a disability in reference to the Equality Act 2010. Because it is one of the hidden conditions, when running into performance related issues at work, you will be entitled to alert the manager to the difficulties you are encountering due to dyspraxia. Consequently, your employer is expected to make ‘reasonable adjustments’ within the working environment so that you can work at your best. I was lucky because on full disclosure, my CEO kindly read the relevant literature on the subject, so agreeing to adopt the recommendations my diagnosis report suggested. However, this was a personal judgement I made as an individual based on mutual trust. Others will use their own discretion on whether they think it is appropriate to disclose or not, and that is fine too.
- Following a formal diagnosis as a guide, you will be able to familiarise yourself and develop coping strategies from the issues highlighted in the report’s conclusion. Likewise, the results of the targeted tests should clearly set out the type of support you would need during the next stage in your life. In the coming years I learned how to ask for help if I needed it and approach suitable therapists who later encouraged me to take life in manageable chunks focused upon my strengths.
If you have decided to try for a diagnosis of DCD, here are some things to think over ahead of time:
- Be prepared to revisit childhood behaviours when collecting evidence as dyspraxia is a lifelong condition.
- Dyspraxia may present differently as an adult, so ensure the specialist you are consulting is right for you by either checking on their qualifications and experience or by asking questions before application.
- If you are self-funding and feel that the costs are unaffordable, ‘Dyspraxia Magazine’ recognises the validity and the necessary need to self-diagnose.
- Some practitioners will make it a requirement that other neurological conditions have been ruled out before a diagnosis of dyspraxia can be made.
According to the Dyspraxia Foundation UK, there is no single route everyone will agree on as leading to a cast-iron diagnosis. If you are seeking a professional clinician or specialist who can diagnose dyspraxia, they should be able to write a comprehensive report with evidence you meet the criteria via the ‘Diagnostic Statistical Manual of Mental Disorders (DSM–5)’.
There are many kinds of practitioners in the UK who are prepared to assess over a broad range of areas relevant to dyspraxia, but the likelihood of accessing any one of them locally will differ depending on where you live. In my case, I was required to travel across the country to see the therapist of my choice. You might also see one or a mixture of the following as part of a multidisciplinary team.
- Your GP in ideal circumstances is the best place to start your search. A willing local practitioner can make a referral on your behalf with other specialists or therapists prepared to diagnose dyspraxia. However, at the time of writing, we acknowledge that if persuading your doctor to direct resources from the NHS to support an adult diagnosis isn’t successful, there are other options.
- Neurologists will confirm other issues affecting the nervous system can be ruled out.
- Occupational Therapists (OT) are holistic practitioners. They can make a broad assessment on your handwriting, sensory perception and physical issues.
- Psychologists frequently work in tandem with Occupational Therapists by testing verbal IQ, emotional and behavioural response.
- Physiotherapists concentrate on the physical difficulties attributed to dyspraxia.
- Work and University Placed Assessments are often free, sometimes a contribution may be required. Depending on the type of assessment they may not be diagnostic but this should be communicated with you early on and will be described as a pre-assessment assessment. Even if they are not diagnostic, they do help identify areas where you will need support in your given placement and will be a good indicator before spending lots of money on a full diagnostic assessment.
Funding and Organisations to Contact
Unfortunately, at a time when the NHS is stretched beyond capacity, self-funding for adult diagnosis is in many cases the only option available. Costs will depend on the nature of the assessment given though they will range from £300 - £900 depending on the length and depth of the process under consideration. Often a bespoke report describing your individual diagnosis will be more expensive than the more generalised tick box approach.
Below is a list of organisations and therapists to contact if you or someone you know is enquiring about a late diagnosis.
Organisations Focused on Dyspraxia
Dyspraxia Foundation are a charity supporting dyspraxia who offer advice about DCD via a dedicated helpline.
https://dyspraxiafoundation.org.uk
01462454986
Dyspraxia UK occupational therapists offer a specialist adult diagnostic test and a full report. This is a diagnostic assessment the NHS will recognised if filed on your records with the local GP. Fees are £785 (or £889 within London).
01223967897.
Other Contacts
Annette Dickens is a private specialist assessor of Dyslexia and Dyspraxia. Her fees are stated at £525 for a dyspraxia assessment operating in the South (Berkshire, Oxfordshire and Surrey).
https://www.dyslexia-annette-dickens.co.uk
07540092738
ASD Clinic treat patients of all ages and will be prepared to assess dyspraxia in adults later in life.
https://www.asdclinic.co.uk/index.php
03300886693
Exceptional Individuals offer workplace needs assessments for neurodivergent individuals.
https://exceptionalindividuals.com
02081336046
Herts and Beds OT runs a 2-hour assessment face to face with a report that costs £450.
Lexxic represent psychologists recognising dyspraxia from the point of diagnosis helping clients to identify the best long-term solutions in the workplace or at college.
03303112720
Louise Hilliar - Chartered Psychologist provides a diagnostic dyspraxia assessment for adults based on a detailed questionnaire and evidence with a full report given at the end.
https://www.louisehilliar.co.uk
07702797484
Paul Sanderson is a registered practioner psychologist in the southwest of England and will assess specific learning difficulties such as DCD with a detailed report. The test takes 2-3 hours to complete.
http://www.paul-sanderson.com/index.html
01872552814
07532051211
Sheffield Adult Autism and Neurodevelopmental Service (SAANS) offer assessment and post diagnosis support for neurodevelopmental disorders including DCD.
https://www.shsc.nhs.uk/services/sheffield-adult-autism-and-neurodevelopmental-service-saans
01142716964
SPLD South is an education service for children and adults offering diagnostic assessments based in Southampton. The dyspraxia assessment will take 3 hours.
02381784140
Socrates Psychological Services is run by experienced clinicians working within the Greater Manchester and around Lancashire.
https://www.socrates.org.uk/home
01484 514594
The OT Practice is an independent organisation prepared to connect you with an appropriate therapist nationwide and abroad specialising in the field of dyspraxia. https://www.theotpractice.co.uk
03300249910
Thriving Minds by self-referral to an Occupational Therapist offers a telephone consultation service and an adult assessment that will take 3 to 4 hours to complete. Based in Scotland, their fees are usually £600.
https://www.thrivingminds.co.uk
08453370436
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If you live outside the UK
There are other organisations across the world who can provide expert advice about dyspraxia:
America -
Dyspraxia Foundation: https://dyspraxiausa.org/symptoms/adult-symptoms/
Ireland -
Dyspraxia DCD Ireland: https://www.dyspraxia.ie/Adults-with-Dyspraxia-DCD
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Ability Occupational Therapy: https://www.abilityot.ie
OT For Life: https://otforlife.ie/site/index.html
Psychological Society of Ireland (PSI): https://www.psychologicalsociety.ie/about
Canada -
Canadian Association of Occupational Therapists: https://www.caot.ca/site/aboutot/howtofindanOT?nav=sidebar
Australia –
The Communication Disorders Treatment and Research Clinic:
sydney.edu.au/health_sciences/speech_pathology/clinic/index.shtml
The National Centre for Learning Disabilities:
https://www.ncld.org
New Zealand - The Dyspraxia Support Group – NZ:
http://dyspraxia.org.nz