Findings from a national consultation with young people living with dyspraxia
During the summer of 2009 the Dyspraxia Foundation consulted with 36 young people with dyspraxia aged 12-25 years to explore some of the joys and frustrations of growing up with the condition.
What we did
A survey was posted on the Dyspraxia Foundation website and was promoted at the Dyspraxia Foundation AGM in June 2009 (which focused on issues of interest to teenagers and young adults) and on the www.dyspraxicteens.org.uk web forum. 14 responses were received from around the country. In addition workshops for teenagers and young adults were held in Berkshire and Norfolk. During these sessions 22 young people aged 15-21 years described their experience of growing up and living with dyspraxia. These sessions were facilitated by two adults with dyspraxia and a volunteer for the Dyspraxia Foundation.
The survey respondents
Respondents:
• Male = 9
• Female = 5
Age range & Number of respondents
12-14 = 1
15-18 = 8
19-21 = 3
22--25 = 2
Location & Number of respondents
Scotland = 1
North west = 1
Midlands = 1
East of England = 3
South East England = 2
London = 1
South = 3
Unknown = 2
12 respondents preferred the term “dyspraxia” while only one preferred the term “developmental coordination disorder”. One person was not bothered either way.
4 of the 14 respondents had a co-existing condition, 9 did not and 1 was unsure.
The workshop sessions
22 young people aged 15-21 years participated in the workshops. It was evident from these sessions that people with dyspraxia, unlike some people with related conditions, are very able to articulate their areas of weakness and strength. Many of the workshop participants had great intellectual insight into their difficulties but this self-awareness was often accompanied by emotional and practical immaturity.
The findings
13 out of 14 (92%) survey respondents felt that teenagers needed different support to children, yet only 4 (28%) had received help from a social worker or another professional to develop a plan to help them as they grew up.
The people who responded to the survey and those who participated in the workshops told us about the type of support that they needed. They said they needed:
• Help with the practical challenges of coping with A’ levels and higher education.
• Access to physical activities that were age-appropriate to develop their motor coordination
• More emotional support and understanding
• Help to develop life skills such as shopping, cooking and cleaning
• Help applying for jobs and getting suitable employment
• Support with developing friendships and social skills.
Managing to find employment was a source of concern to many of those who participated in the consultation and 35% of the survey respondents felt that their dyspraxia was likely to be a barrier to them in their chosen career. Some of the workshop participants had experienced difficulties deciding what they wanted to do and a lack of awareness about dyspraxia by Jobcentre staff was another challenge. When in employmet people with dyspraxia worried about how the other staff would see them for example, one person recognised that they needed to make lists to help them remember what they needed to do but felt silly writing things down.
Many of the young people who took part in the workshops were hugely creative, kind people, some of whom are remarkably high earners for their age, running their own small business enterprises and so on. However they were often not able to manage simple routines in terms of domestic and personal care and organization. They had difficulty following a route and were unable to travel without support on public transport or keep themselves safe in busy environments such as central London. Three quarters of those participating in one of the workshops said they didn’t feel confident about going out by themselves. They worried about finding their way around and handling money. They were worried about leaving money in cash machines and that poor organisation meant they would spend all their money as soon as they had it.
A huge source of tension with many of the young people who wanted to be independent was that parents or social workers wanted to make sure they had a responsible adult with them at all times. Some of these teenagers know they have been classified as vulnerable young adults and will be under the supervision of more mature people at least until this is reviewed when they are 25. Being brave enough to accept you need help is one thing but getting this provided in a respectful and age appropriate way can be a real challenge. The young people we consulted said that just because there may be practical and safety concerns which are very real, doesn’t mean that they didn’t have very real desires, socially, sexually, spiritually, and in terms of education and vocation.
One of our 17 year olds was very embarrassed that she wasn't allowed out alone and her mum still insisted on being everywhere with her and holding onto her when she crossed roads. She didn't have a problem with admitting she had a poor grasp of danger, but she desperately wished that she had funding for someone closer to her own age who understood her to be able to go with her on days out and to the shops. Ultimately she wished her mum would believe that a boy her age could be trusted to take her on a date and keep her safe.
Our young people were on the whole frustrated that they frequently received too much help on the vocational or educational front whereas they got little help on an emotional level. Making and maintaining friendships was a real area of difficulty. Some people said they weren’t honest with friends about their dyspraxia because they feared they would be rejected. One young person said “I find it difficult to explain why I am the way I am because I don’t understand myself. I want to be normal. I want to be with other people.” Another said “I see other people having a relationship and wish something like that could happen to me.”
It is a very brave move to share your own weakness with others and can be a real kick in the teeth to then be told “Well if you know what's wrong with you why don't you sort yourself out?” One person said “Without being dramatic it’s like being buried alive, living with the unavoidable and at times frighteningly inevitable.” But this doesn’t have to be the case if friends, family, employers and providers of social care enable people with dyspraxia to shine in their strengths and help support and if appropriate carry them through their weakness in a non patronizing way.
Volunteer Adult Advisor to the Dyspraxia Foundation Alex Gowing-Cumber who helped facilitate the workshops explains that while people with dyspraxia may seem to be coping with their everyday lives few people are aware of the stress and mad paddling to stay afloat that is going on underneath the water.
“It is an ongoing struggle to help the general public and professionals understand this skew in ability and sometimes maturity. However those of us who have been there done that and got the T shirt can associate and honestly reflect on the situation. Some of the most gifted, creative people, some of the best chairs of companies, are also deep down, gentle emotional people who need assistance with packing their bags, putting their tie on, getting to the right place at the right time. Some of the most high powered political and business people still need to go home, talk to the dog, watch a Disney movie and curl up on the sofa with a warm Ribena and a favourite soft toy. Admitting this vulnerability is actually a strength and nothing to be ashamed of. At heart the dyspraxic young person has to live with the complexity of being 6, 16, 46, and 86 all at the same time. Tantrums and insecurities go hand in hand with abilities Such is the complex gift of dyspraxia which those of us who suffer from it and those of you who support us have to endure together. It’s both frightening and awesome!”
Dyspraxia Foundation – findings of a consultation to find out how life is experienced by teenagers/young adults with dyspraxia
October 2009