Dyspraxia in adults: a neglected and hidden disability

Third of Adults seeking an assessment for dyspraxia were told that their GP could not help


Campaign calls for equality of access to diagnostic assessments for adults likely to have dyspraxia

Dyspraxia Foundation this week announces findings from a new survey which reveals a startling inequality of access to diagnostic assessments for adults likely to have dyspraxia – a form of developmental coordination disorder that can also affect planning, organisation and speech.

Around 3% of the adult population are thought to have dyspraxia, but a lack of diagnostic pathways means that dyspraxia often remains unrecognised in people who were not diagnosed as children.

The nationwide survey of almost 1500 adults highlighted the frustrating and distressing impact of poor awareness of dyspraxia in adulthood and the lack of diagnostic pathways for people whose difficulties were not recognised as children.

Nearly a third of adults who went to their GP seeking an assessment for dyspraxia were told that their GP could not help and 10% of survey respondents who believe themselves to have dyspraxia have been seeking a diagnosis for more than 2 years.

Lack of diagnostic pathways and uncertainty about where to go for help were the main barriers to diagnosis and adults were often unable to secure a diagnostic assessment without paying. For many the cost of a private assessment was prohibitive.

A worrying 80% of people who were diagnosed with dyspraxia as adults did not see a medical doctor as part of the diagnostic process as other neurodivergent explanations may be found by the specialist teacher/psychologist.

The importance of diagnosis for adults is clear. 71% of people diagnosed with dyspraxia were relieved to have a reason to explain their difficulties. 52% reported benefits to their mental health, 36% felt having a diagnosis helped relationship with family members and 52% reported benefits to daily living activities. 72% received advice regarding reasonable adjustments.

By contrast, two-thirds of respondents without a formal diagnosis feel this has had a negative impact on social relationships, mental health and everyday life. Over half feel that a lack of formal diagnosis is holding them back in their education and career progression.

“I’ve always believed I was underperforming, clumsy, disorganised, a ‘bit slow to catch on’ despite giving it my best effort. I’ve had depression and anxiety for as long as I can remember, moved around jobs a lot and I constantly worry I’m falling behind. I have difficulty following instructions, I really can’t do it. People think you are being lazy ormaking it up, but I really struggle to do practical things.” – undiagnosed adult.

Sophie Kayani, Chair of the Dyspraxia Foundation comments: “This survey has highlighted the very distressing impact that the lack of diagnostic pathways for adults has on people whose difficulties were not picked up in childhood.” “We receive many calls to our helpline from adults who are experiencing difficulties in their workplace or in their personal lives because of problems which could be explained by dyspraxia. But without a formal diagnosis these people are unable to access the support, understanding and adjustments they need to reach their potential and live the full and happy lives they deserve.

“What we need is better awareness of dyspraxia amongst GPs so that people don’t feel ‘fobbed off’ or embarrassed about asking for help. We also need clear diagnostic pathways that include a medical assessment, and access to post-diagnostic support so that people can identify the tools and strategies that will enable them to live their best lives at home, in education and in the workplace.”

That’s why the Dyspraxia Foundation – the only national charity in the UK dedicated to raising awareness of the condition – is focusing on raising awareness of dyspraxia in adults for its 2019 Awareness Week this October.
During the week the charity will be launching a series of resources for adults and professionals.

Sophie adds; “Whilst this survey has flagged up some very real concerns about the lack of diagnostic pathways for adults, the Dyspraxia Foundation has a very positive outlook and we support many wonderful people who are achieving amazing things, despite their difficulties. At the Dyspraxia Foundation, we truly believe that dyspraxia shouldn’t hold
anyone back from fulfilling their potential.”

Dyspraxia is a form of developmental coordination disorder and affects people across the lifespan. Poor physical skills are the main feature of the condition, but dyspraxia can also affect speech, organisation, planning and time management.

Please contact 01462 455016 or info@dyspraxiafoundation.org.uk if you would like more information about the Dyspraxia Foundation or to become involved with fundraising or awareness activities during Dyspraxia Awareness Week (6-12th October).
ENDS

Click here to download a copy of this press release. 

Additional Document – Part data analysis. 

We’ve produced an analysis of part of the data, but please note that this document only represents part of the data, that relating to people who’ve grown up with the diagnosis.

An analysis of data provided by people without a formal diagnosis & from people diagnosed as an adult will follow.

For more media / survey information, to set up an interview with a local case study or representative from the Dyspraxia Foundation please call 01462 455016 For more information about the ongoing work of the Dyspraxia Foundation and how to become involved or access help, information and advice, please visit
www.dyspraxiafoundation.org.uk / @DYSPRAXIAFDTN

Note to editors:
1 The survey ran from 47 days from 16th June– 1st August 2019 and was promoted via the Dyspraxia Foundation website and social media channels. There were 1455 respondents aged 18+ years: 398 were diagnosed as children, 439 were diagnosed as adults and 618 believed themselves to have dyspraxia but did not have a formal diagnosis.