United Kingdom of Great Britain and Northern Ireland (UKGBNI) Disability Rights Commission (DRC) Neurodiversity and Autism Action Group (NAAG) Unanimously Agreed Documents: Neuro-Diversity: Meeting The Challenge Conference Held at the Radisson Hotel Manchester, on Monday 26 March 2007 Report of conference
Re: United Kingdom of Great Britain and Northern Ireland (UKGBNI) Disability Rights Commission (DRC) Neurodiversity and Autism Action Group (NAAG) Unanimously Agreed Documents: Neuro-Diversity: Meeting The Challenge Conference Held at the Radisson Hotel Manchester, on Monday 26 March 2007 Report of conference
These proceedings were unanimously agreed. Along with the other documents unanimously agreed, namely Jo Todd´s Neurodiversity and Human Rights report and the Disabled People´s Charter of Essential Needs to be fully met, they were signed off by both NAAG, including its Chair, DRC Chief Executive Officer (CEO) Bob Niven, and for the DRC as a whole by DRC Chair Baroness Jane Campbell of Surbiton. They were also incorporated as Appendixes to the full version of the NAAG Majority Report "The Majority is the Truth Plus One"
NEURO-DIVERSITY: MEETING THE CHALLENGE
CONFERENCE HELD AT THE RADISSON HOTEL MANCHESTER, ON MONDAY 26 MARCH 2007
Report of conference
INDEX PAGE
Page number
Summary, the Conference & this Report 4-5
Section 1: Key Sectors
• Education 6-8
• Employment 8-10
• Health and social care 11
Section 2: Remarks by Guest Speakers
• Janet Taylor 12-16
• Mary Colley 17-19
• Orla Reardon 20-21
• Ben Stone 22-23
• Jean McGealy 24-25
Section 3: Aspects of the Justice System 26-27
Annex 1: Conference programme & participants 28-30
Annex 2: Justice System: some good practice and related
guidance 31-35
CONFERENCE REPORT AND ANNEXES
“NEURO-DIVERSITY – MEETING THE CHALLENGE”
SUMMARY
The conference focused on securing equality and fairness for people in the neuro-diverse community and the autistic spectrum in key sectors of society and the economy. Throughout, the event was strongly based on the involvement and experiences of neurodiverse individuals themselves.
The conference looked in particular at sectors - employment, education, social and health care, and the justice system – that are of special importance to the prospects and rights of ND people. There was a special emphasis on identifying specific areas for action by decision-makers and others in positions of influence.
The conference identified a number of key generic issues and objectives, in particular the pressing need to:
• End the widespread low levels of awareness and understanding of ND, as well as of the range and mix of conditions involved
• Tackle the isolation and lack of integration faced by many ND people, often leading to low self confidence and low self esteem
• Strengthen effective communication with and involvement of ND individuals and their advocates
• Establish a better mix of public policies and allocation of funds, including support arrangements and the elimination of current inefficiencies and discontinuities
• Promote the particular talents of ND people at work and elsewhere, and create environments in which their potential can be realised.
The conference called on all organisations and individuals with a role to play to pursue these objectives in their areas of responsibility. The Disability Rights Commission undertook to publish and promote the conference outcomes, as well as to urge the new Commission for Equality and Human Rights to do likewise and to ensure that its own plans and priorities include a continuing emphasis on neuro-diversity.
THE CONFERENCE AND THIS REPORT
The conference was organised by the Disability Rights Commission in conjunction with members of its Neuro-diversity and Autism Action and Advice Group. The speakers and those attending comprised ND individuals and others with extensive experience of ND issues in a professional or personal capacity.
This report has three main Sections:
• the first is concerned with the key sectors of education, employment, and social care and health. In each case, the report summarises the key issues and areas for action that were identified in the various discussions and workshops
• the second sets out the presentations, remarks and perspectives given by four members of the ND community and a parent of a child with severe related impairments. These presentations set the scene for subsequent plenary discussions
• the third section is concerned with the expert presentation given on aspects of the Courts system and some difficulties they pose for ND people.
The conference programme and those attending are at Annex 1.
SECTION 1: KEY SECTORS – ISSUES AND
SOLUTIONS
EDUCATION
Issues
Awareness of Neuro-diversity is very low in most mainstream schools and elsewhere in the education system. This applies to Neuro-diversity in general as well as to particular conditions such as dyspraxia. Education authorities are also often weak in providing diagnosis as well as guidance.
As a result, many teachers and other education professionals are ignorant of ND, with the consequence that individuals can experience inadvertent as well as deliberate discrimination and disadvantage experienced by individuals. Bullying by other pupils can also be common with little done to correct this (for example all three speakers from the DRC Neurodiversity Group had experienced such bullying).
The education system frequently operates on a group basis, with relatively little attention paid to the needs of ND individuals who in practice differ to a significant extent from the non-ND pupils. Class sizes can have an important bearing, with large classes tending to disadvantage ND pupils.
Once a person with ND leaves the education system there are almost always no appropriate support services in the workplace causing a high level of unemployment amongst people with ND or they are sacked from their jobs because adjustments in the workplace have not been implemented. This was for example a recurring theme from all four guest speakers.
Research into graduates with ND in the workplace has shown there is conclusive evidence to suggest they are not as successful as NT (Neurotypical) graduates in the workplace. Bullying and dismissal are far more frequently encountered by ND graduates Awareness training in ND in the university careers service, in job centres and for employers are needed, as is the adaptation of job descriptions for ND individuals. Research has found that 75% of the sample of people with ND did not find work appropriate to their abilities and qualifications (outside further academic study and research).
Careers advisers, at universities and elsewhere in the education system frequently lack familiarity with and sensitivity to the particular abilities and needs of ND individuals.
In service training of ND awareness is also needed for existing support staff and teaching staff in schools, youth service, further and higher education.
Solutions
There needs to be major investment in the initial and ongoing training of teachers and other education professionals.
PGCE courses can be made accessible to a greater number of ND individuals, helping to raise awareness throughout the teaching profession.
This training must include awareness raising on ND conditions and ways to bring out the special ability of the individuals and to overcome barriers they typically face. In particular, there needs to be enhanced and accurate early diagnosis of conditions coupled with a focus on the capabilities of the individual as well as the particular support they may need.
An inclusive approach is required, based on partnership with and involvement of the individuals concerned as well as their chosen representatives. This should extend not only to professionals and education authorities, but also to fellow pupils and students. In this way, broad based understanding and helpful cultures can be built.
At all stages and levels, stereotypes and pigeon-holing must be tackled. Schools and other education institutions should have in place well-developed “recovery systems” for those who fall behind, and extensive use should be made of the [“Pathways”] opportunities to help realise the potential of all pupils and students.
A number of special schools may not be providing sufficient challenge to ND pupils who as a result do not realise their full potential. Where special provision applies, it should be based on the involvement of ND individuals, their advisers and parents.
The general assumption is that mainstream schools offers the best way forward in that they can help the integration of ND pupils while at the same time raising the awareness and changing the attitudes of non-ND pupils and students.
However, provision in mainstream schools must be capable of meeting the particular needs of ND individuals. There are moreover some individuals for whom mainstream education currently poses great difficulties and special provision for them – on a full or part time basis – may sometimes be the best answer until the standard of tailored provision in mainstream education is everywhere raised to the standard of the best.
Throughout education, contact and dialogue between the ND and non-ND perspective is to be encouraged. The positive aspects of ND should be highlighted, including highly developed skills. ND individuals are often ideally placed to provide this familiarisation.
Educational technologies and techniques must be applied that positively benefit ND people, and not disadvantage them as can happen with for example assessment and appraisal techniques.
Closer working should be established between universities and colleges with business to help ensure ND individuals secure the skills and training they need to obtain and to progress in jobs.
EMPLOYMENT
Issues
With some notable exception, there is a huge lack of understanding on the part of business and employers more generally about ND. This is very widespread although some smaller companies and organisations have proved more adaptable than large organisations.
Recruitment and promotion policies and procedures, working environments and work practices rarely reflect the needs, or potential, of ND individuals.
Some unadjusted technologies can also pose difficulties as can procedures and systems (including performance appraisal arrangements) designed with non-ND people in mind.
In employment there is often a strong emphasis on team working where as many ND people do not find it immediately easy to fit in with peers at work.
There is considerable scope for strengthening trade union representation of and support for ND workers. There is a case for a union specific to ND.
Benefits and welfare reform can also work to the disadvantage of ND people through lack of recognition of ND as a disability and through lack of awareness on the part of medical professionals providing assessments and advice relevant to the receipt of benefits. Different approaches appear to apply with respect to different benefits.
Different approaches appear to apply with respect to different benefits.
Undiagnosed Neurodiversity and lack of understanding of those diagnosed with ND can cause misunderstandings and lead to unjust withdrawal of welfare benefits. If a person with ND is unable to hold down a job because their undiagnosed or unrecognised access needs are unmet, they are likely to have insufficient National Insurance credits to be entitled to Incapacity or sickness benefits. They may as a result be pressurised into unsuitable work placements, or be excluded from receiving any benefits, leading in turn to poor life chances and poverty.
Progress towards effective Independent Living is slow and patchy.
Solutions
Disability and other relevant training for employers and their nonND staff should include awareness-raising about ND and he potential of ND individuals.
Working environments in terms of noise, space and other characteristics should as standard be designed with ND in mind, and on the basis of the involvement of ND individuals.
The trade union movement should pay closer attention to ND in terms of training their own officers, provision of advice and support and possibly organising specific sections within their organisation. The role of the League of Blind and Disabled People within RADAR should be publicised.
The public sector has a key role to play as employer as well as provider of public services. And the statutory Disability Equality Duty (DED) provides a framework for stimulating public bodies into greater awareness and helpful action.
ND conditions should always be included among the disabilities covered by the DED, and all employers should be made aware more generally that ND conditions are covered by the duties laid down by the Disability Discrimination Act.
Government, and particularly the Office for Disability Issues (ODI), should accelerate progress towards Independent Living including through implementation of the recommendations in the “Life Chances” report produced by the 10 Downing Street Strategy Unit.
The Department for Work and Pensions has a particularly important role, including through Job Centre Plus and the operation of Access to Work.
As part of any continuing government action on benefits and welfare reform, attention should be paid to particular circumstances of ND claimants. The training of benefits officers and their advisers should include awareness-raising on ND, and the rules governing benefits decisions should consistently include ND conditions among the disabilities in question.
ND individuals should be encouraged to consider the help they could receive from the Claimants Union.
Health and Social Care
The direct involvement of ND people in the design and operation of the services are crucial to ensuring effective and efficient provision. The individuals themselves understand their conditions best and the best associate packages of health and social care.
The advantages and benefits for ND people of direct payments remain substantially underestimated and ignored.
Training in awareness, diagnosis and actions to take must be greatly enhanced at all levels in the health and social care professions, in initial training and ongoing professional development.
Training in the risks of “diagnostic shadowing” should be enhanced, together with enhancing the ability of the medical professions to distinguish between different types and combinations of ND conditions, and also between ND conditions, learning disabilities and mental health problems.
A “one-size fits all” approach to service provision is especially inappropriate for ND people. Individuality is key here, and tailored services will produce the best lasting results.
Far greater coordination, record-sharing and “joined-upness” between the health and social service is needed to ensure continuously appropriate, informed care and service to ND individuals.
Appropriate housing, and particularly social housing, arrangements are fundamental to improving the opportunities and the quality of life of ND people. But awareness of their accommodation needs is low, and actual provision is even more limited.
Health and social care premises need to reflect the sensory and other needs of ND individuals. Open plan spaces and wards can prove particularly difficult for them.
Advocacy services and other working closely with ND people should be enhanced to assist not only communications but also to help highlight the special and pressing difficulties they face.
SECTION 2: PRESENTATIONS AND REMARKS BY GUEST SPEAKERS
“A NICE GIRL BUT JUST NOT SUITABLE!” Janet Taylor’s presentation
Phone: 07791-273792
Email: janet@dyspraxia-training.co.uk
Web: www.dyspraxia-training.co.uk
My name is Janet Taylor I am the unpaid co-ordinator of Greater Manchester Dyspraxia Adult’s Action. I set up a self help group for adults with dyspraxia after experiencing medical retirement caused
by disability discrimination. For the past six years I have empowered other adults living with dyspraxia and related impairments and raise awareness to avoid the same thing happening to other people living with dyspraxia.
I am at present a student teacher on the PGCE at the University of
Bolton Teaching Further and Higher Education. M My Work Based Experience currently includes teaching the Politics of Disability at the University of Bolton and Community and Youth Work at the University of Manchester. I also have my own part time consultancy business Dyspraxia Inclusive Training.
Although I am now confident and successful particularly academically this has not always been the case. I live with dyspraxia and dyslexia and probably Attention Deficit Disorder without hyperactivity which were not identified until I was 33. Because Dyspraxia often overlap with conditions such as dyslexia ADD, Aspergers Syndrome and Tourettes Syndrome people with these conditions choose to call the umbrella term neurodiversity.
My research into Graduates with ND in the Workplace showed that there is conclusive evidence to suggest that graduates with ND in the workplace are not as successful as NT (Neurotypical) graduates in the workplace. Issues which would not affect NT graduates but are unique to ND graduates include being sacked from their jobs or bullied due to lack of organisation. Awareness training of ND in the university careers service, job centres, for employers and the adaptation of ND-friendly job description is needed. 75% of the sample of people with ND did not found work appropriate to their abilities and qualifications outside academic study and research. (Taylor 2006)
I am now going to confess to the items I leave off my CV although this was not my fault but due to disability discrimination and lack of ND awareness in educational institutions and the workplace. This caused my neurodiverse impairments to become a disability. This caused several disabling barriers because my needs were overlooked and I significantly underachieved and believed I was an unemployable failure and was extremely depressed and disempowered.
At school I failed my 11 plus and found my self in the bottom remedial class and moved up to the average steam in Second year. I found competitive sports and PE. a nightmare and I was always the last to be chosen for the rounders or netball team. I found it very frustrating that marks were given for copying the teachers’ work neatly off the blackboard and not for original thought it was difficult to write neatly, copy accurately and spell. I was constantly bullied by my peers.
I left secondary school with the types of grades were perfectly acceptable for my school but I realise now that I had significantly underachieved. My career advisor, who did not even know me well, recommended that because I was "non academic", I should go into catering which proved to be totally unsuitable. I was sacked from several jobs for not being quick enough and an inability to multi task when working under pressure in a busy kitchen and was told each time that I was “a nice girl but just not suitable”.
I was punished by the benefits system for trying to get out of the high level of unemployment of the 1980’s in Manchester, by having my unemployment benefit halved for being dismissed from a job.
This kind of issue still happens today if Job Centre staff are not aware of dyspraxia - filling in application forms illegibly can be misinterpreted as deliberately not trying to find work.
I worked on an employment scheme as a classroom support worker at a community college with people with learning difficulties and proved to be good at this. I went on to do a course for teaching adults with learning difficulties and passed with flying colours.
I then got a job as a residential Support worker with people with leaning difficulties. But due to lack of understanding of my own difficulties and to my employer's ignorance of dyspraxia, I found this too stressful.
I was redeployed into a daycentre with highly physically dependent service users in spite of disclosing I had co-ordination difficulties. I became very depressed was bullied by my peers and lost my self respect.
A college of occupational therapists study showed that Over 80% of people with dyspraxia diagnosed after the age of 7 showed negative emotional outcomes (Mental health problems, unemployment, homelessness, substance addiction, and /or abuse by the age of 23), compared with the rest of the population. Dunford & Richards(2003)
Unmet needs of dyspraxia and ND can result in offending. Studies have shown a greater percentage of people than would be expected.
(Kirk and Reid 2001) study in Scottish prison showed that
50%of inmates had dyslexia (Portwood 1999) found that in a Durham Young Offenders Institution. 61% had dyspraxia and 46% had a co-morbidity of dyspraxia and dyslexia.
“It is estimated as many as 5% of school age children have ADHD and 100,000 children need treatment. 23% of crime has been attributed to or non existent diagnosis of ADHD children in care homes. Court records suggest that ADHD youths are more likely to be arrested and have multiple convictions BBC news (2004)”.
After seven years I was then redeployed into a very busy open plan office which is highly distracting if you live with ND and I was advised not to disclose my disability, I delivered faxes to the wrong room, struggled with the photocopier and put people through to the wrong extension number causing utter chaos. So I ended up getting medically retired.
Since being diagnosed with dyspraxia, being medically retired and coming to terms with my learning differences, instead of being ashamed of being dyspraxic and hiding that I am different from other people, my life has in fact been transformed. From feeling absolutely worthless to being confident enough to teach and attempt to build up a customer base for my dyspraxia awareness business - Dyspraxia Inclusive Training. I recently have been considered for some work teaching community and youth work in September 2008 when the new Community and Youth Work Studies degree starts at the University of Bolton.
Being labelled ‘dyspraxic’ is no longer a major issue and is only part of who I am. However there are still many thousands of children, young people and adults with all types of Neuro-Diversity with a wide range of differing abilities who unnecessarily live a very difficult life, and in particular as adults face long term unemployment, depression and anxiety. This is due to lack of awareness of Neuro-Diversity. And it is that lack of understanding that causes so much suffering, rather than my ND brothers and sisters actually suffering from neurodiversity.
Bibliography
Dunford C, Richards S. 2003 doubly disadvantaged: a report of a survey on waiting lists and waiting times for occupational therapy services for children with developmental coordination disorder. London: College of Occupational Therapists, National Association of Paediatric Occupational Therapists.
BBC news http://bbcnews.co.uk (2004 12/15)
Portwood M (1999) Developmental Dyspraxia: Identification and
Intervention a manual for parents and professionals David Fulton:
London
Kirk J & Reid G (2001) An examination of the relationship between dyslexia and offending in young people and the implications for the training system. University of Edinburgh.
Taylor J (2006)Graduates with Neurodiversity in the Workplace A Dissertation Submitted in Part Fulfilment of the Requirements for the Post Graduate Certificate in Professional Development:
University of Bolton
MY EXPERIENCE OF AD(H)D – YOU JUST CAN’T KEEP ME DOWN
Remarks by Mary Colley, Director DANDA
Thank you Janet for reading this out and sorry I can’t be here today, but I have a diary clash with another important conference – on AD(H)D in London. Of course, I really would have liked to go to both!
Many of you will already know me as somebody who has dyspraxia as I’ve talked and written about it widely particularly in adults. However recently, as I‘ve learned more about myself, I feel I have AD(H)D just as badly as dyspraxia.
I was diagnosed with both AD(H)D and dyspraxia about 10 years ago. Both AD(H)D and dyspraxia are part of neurodiversity along with many other conditions including dyslexia and Asperger’s Syndrome. I believe I have both these conditions as well mildly. I’ve been diagnosed with dyslexia and want to get diagnosed with Asperger’s soon.
Janet has talked about her dyspraxia and I share many of the symptoms of that condition with her. However, I believe my dyspraxia is made much more difficult to deal with owing to my AD(H)D, though it does make me very energetic and determined!
Because of my AD(H)D, I find it very difficult to control and regulate myself. I find it difficult to wait for anything and need immediate gratification. I am frequently frustrated and irritable.
Simple everyday tasks are a real problem for me; I find it really difficult to clear up after myself as well as finding it extremely boring. I also find grooming myself and doing household tasks very boring. I flit from one task to another and I often find that I forget what I’m meant to be doing in the middle of something and start doing something else.
However, I can focus for hours at a time on something that I am interested in such as AD(H)D and dyspraxia in adulthood! I’m sure one of the reasons that I am so unco-ordinated is because I can’t sustain my attention on simple tasks such as eating in a controlled manner for long. I, consequently spill things down myself all the time - but I often don’t notice this. Sometimes I’m far too impulsive for my own good and I find it difficult to regulate myself as withl all adders. I tend to eat and drink too much.
I had an awful childhood. At school, I had no friends for most of my secondary school education and was constantly bullied. My teachers were always having a go at me for my ‘careless’ work, messy handwriting, bad spelling and bad English. They also commented on my inability to pay attention and listen. They did everything they could to put me down. In fact, they told me that they couldn’t possibly guarantee to get me through my A levels, let alone get me into university.
At that point, I thought I’d show them and I was delighted to be able to tell them that I got into university a few years later in spite of them. To this, they said – ‘well we just can’t keep you down - can we’. I got a good degree, considering how unsupported I was, and really enjoyed my time at University.
However, I found the world of work really difficult. I worked in a photo library (quite the wrong job for me!) where I had to file pictures so they could be retrieved easily to be sold to newspapers, books etc.
I found the job overwhelming because of my bad organisational skills. I didn’t understand the unwritten rules that go with any job. I hated being told what to do especially when I thought it was silly. (I, like many adders, can be very defiant). I kept losing things and because of this and my poor communication skills, I was eventually sacked.
I bounced back after my diagnosis a few years later. I was prescribed dexamphetamine, a drug like Ritalin and have had some coaching to help me organise myself better. (I had to go privately though as it’s very difficult to get any help on the NHS.) Unfortunately, I can’t take dexamphetamine as often as I would like as it raises my blood pressure, but when I do it calms me down most of the time.
In the end, I set up DANDA (an organisation for Neuro-diverse adults) with others. I really like working for myself. I run workshops on adult dyspraxia and AD(H)D on a self-employed basis. It can be very difficult for me to be organised sufficiently to do what I’m doing in DANDA, but as I’m so motivated and determined, most of the time I can do the job alright.
I am incredibly energetic and can see things others just can’t see as a result of my AD(H)D. I, with others, planned and organised two successful conferences for professionals on Neuro-diversity - well over 200 attended both events. You just can’t keep me down!
DIFFICULTIES, DIAGNOSIS, MAKING PROGRESS
Orla Reardon’s presentation
• Orla is 30. She works for Newcastle City Council as an admin assistant in the chief executive’s office.
• She was diagnosed with Asperger’s Syndrome (AS) 4 years ago, aged 26. The difficulties that Orla experienced as a result of her condition were picked up at an early stage in her life but no one could pinpoint exactly what the problem was as AS was not then widely recognised in the medical field.
• Diagnosis brought about sense of great relief. Orla had always felt different pre-diagnosis. Diagnosis and actually being given a name for her condition meant that she no longer felt alone in what she was going through. She now feels like a completely different person – her life has turned around, she’s made lots of friends and feels ‘alive’ as she’s not so scared of life now.
• Life as a whole has been extremely difficult. School was complete torture. Orla was bullied throughout school, and this didn’t stop at college either. Orla had no friends at school; she drifted from group to group. She felt she couldn’t stand up for herself and had no self-confidence. She found it difficult to speak to people, thus people thought she was ignorant or that she didn’t want to speak to them.
• What she was actually experiencing was quite the opposite to what people perceived; Orla was very withdrawn and felt unable to interact, thus she would choose to be on her own in her ‘own little world’ where no-one would judge her. Although school and college were difficult for her, Orla gained many qualifications; 11 GCSEs, 3 NVQ’s and also various IT qualifications.
• Even in the workplace Orla was experiencing problems (bullying/harassment), as well as unanswered feelings that resulted (she later discovered) from her condition. When this reached crisis point she had to take some time out, as she
was experiencing depression, low self-worth and no will to get better. It was during her time away from work that Orla found out about AS.
• Diagnosis, however, was far from easy. Orla had to receive a private diagnosis, and it took a very long time. This is partly due to the fact that there is no set diagnosis route, which Orla feels definitely needs to be addressed as there are too many ways of assessing AS.
• Once she received an actual diagnosis, Orla received no post-diagnosis help. Any help that was finally offered was of little use, as the so-called professionals had very little knowledge of AS, and did not even seem to believe Orla’s formal diagnosis.
• However, Orla has devised certain ways of coping with AS. She avoids stressful situations that will make her AS worse, and focuses on being as happy as she can be. She is now in a good working environment, and has very supportive colleagues and friends who are very encouraging, which makes a huge difference as Orla has now become more confident in herself and when interacting with others.
• Orla lives independently and manages a house and car (only a small percentage of people with AS can do this).
• Through learning from her own experiences, and how illeducated many people are about AS, Orla is determined to educate others and to change misconceptions about those with AS. That is why she joined the DRC Neurodiversity and Autism Action group.
• Although determined, Orla still finds it a struggle as it is very frustrating getting through to other people. If she becomes disheartened Orla focuses upon how far she has come and what she has achieved despite the lack of medical support that she experienced.
• Orla hopes that by sharing her experiences with others she will make a difference to others with AS, and will get the message out to those who are unaware or misinformed.
BEING NEURO-DIVERSE AND KEEPING IT REAL IN AN
UNREAL SOCIETY
A Presentation by Ben Stone
A life less Neuro-typical
l My childhood was difficult – Autism was mentioned by several people, including doctors, but the ‘Experts’ dismissed this.
l I struggled socially at school & college, found it hard to make friends, and often played on my own.
l I’ve had several jobs, some good, some bad, but the general trend of me finding it hard socially persisted.
l In the late 1990s, I decided I wanted to study for a degree and quit my job to go to University. Several years later I now have two degrees, but a decent job still eludes me like a mirage in the desert.
l I often feel isolated, still find it difficult to develop relations with people, but I’ll never give up trying.
My Neuro-diversity and searching for the truth
• It was at University that my being Autistic was mentioned to me, by a lecturer, years after it first being suspected.
• I saw a GP, but he advised me that I wouldn’t be having a conversation with him if I was Autistic. Despite this, I managed to get a referral to Manchester Royal Infirmary.
• At MRI, I was dismissed as ‘maybe Autistic’ and sent on my way, but once again I was persistent and eventually got a referral to Professor Digby Tantum’s team at Sheffield University Hospital.
• In late 2004, I was diagnosed with ADHD and Autism Spectrum Disorder. All along the way I simply wanted to learn the truth, and the diagnosis did bring a sense of closure, and answered why I had some of the problems I did.
The Post Diagnosis Era
Awful experiences with:
n DWP
n Scope
n Autistic Society Greater Manchester Area (ASGMA) / Aspirations Project
Good experiences with:
§ National Autistic Society
§ DANDA
§ Key 4 Learning
§ Disability Rights Commission
The Future…
• Despite the bad experiences I’ve had, I’ll try to learn from them and become stronger.
• I can bridge the gap between the Neuro-diverse and Neurotypical world, and if I can find the right job, will go places.
• The big challenges for me are employment, housing, and developing better social skills/confidence.
• My aspirations are the same as anyone else’s – to attain a good quality of life, have some real friends, and do something worthwhile with my life.
My Vision
u Neuro-diverse people getting the same opportunities as everyone else.
u A fairer society where all people can believe in real justice, be tolerant, empowered, and be able to better themselves.
u Individuals and organizations being more accountable and taking responsibility for their actions.
u Progressive devolution of power from Westminster to newly created elected County Governments.
u Proportional representation adopted for all future elections, which will be fixed term, both County and National.
A PARENT’S PERSPECTIVE
Remarks by Jean McGealey
I have two stories about my son Ian. He is now 25 and is in the ‘system‘. He has learning difficulties and cerebral palsy but even with his special needs he has trouble ‘fitting in’. He had to attend a school in Manchester and college in Stockport, but that’s another story!
We finally got a diagnosis of autism when Ian was 10.
As I said I have two stories to tell. They are examples of how things could have been done better and how things were done better.
The first story, however negative, was an experience which made us very proud of Ian.
It starts with a phone call at 8.30am one morning in March 2002. A gentleman told me that Ian had been chosen to carry the baton for the Denshaw (near Oldham) stage of the Commonwealth Games. I thought it was a wind-up but after talking to my husband, David, I discovered it was the truth. He had put Ian’s name forward and not told anyone as he didn’t expect Ian to be successful.
After numerous discussions by telephone the organisers would still not let David walk with Ian and the baton. What did they think - we were going to run off with it?! We said Ian would have to use his wheelchair- more for his comfort. He would not walk with someone he didn’t know (sensible!) but may let a stranger push his chair.
The day came and we set off. When we got there Ian was helped to change into his uniform. He then met the other people in the team and had pictures taken. We all got on the bus and people were dropped off at the designated places.
But our hearts sank when we were dropped off in front of a primary school. About 180 children stood there cheering - Ian cannot cope with children or noise! By now he was chewing his t-shirt and trying to get out of his wheelchair.
Worse came to follow as the person came up the road with the baton escorted by police bikes. As the police saw the children, they thought it would be nice to turn their sirens on! The man who was escorting the baton carrier came towards Ian. He was a 6ft.2 police boxing champion, but Ian won the first round! The baton was placed in the attachment on Ian’s wheelchair. When the policeman tried to push the chair, Ian pushed him away.
The policeman was brilliant. He assessed the situation and asked David to take over. He took the camera from us and took pictures from the back of the vehicle that was proceeding in front. If only the organisers had listened to us, Ian and David could have walked in uniform with the baton!
Having said that, we will always be proud of Ian and will never forget the brilliant policeman!
The second story is an example of good practice.
Ian does not have any verbal communication. He finds it very difficult to let people know what he wants other than immediate needs like food and drink. In Oldham Social Services there is an excellent communication team. Last year they began a pilot scheme to help Ian get his own “passport”. This is a small booklet that he takes everywhere. It contains information about Ian’s likes, dislikes, what upsets him, timetable etc.
Such passports are all different. Some people can give others pictures to show what they want or even objects. The pilot scheme was brought in last year by speech therapist students from Salford University. The two students assigned to Ian talked to me to find out about him. When they began they knew nothing about autism. They certainly knew a lot more when they had finished!
The passport scheme was a great success and is still continuing.
SECTION 3: ASPECTS OF THE JUSTICE SYSTEM
1. Case Study; JS
JS demonstrated the devastating effects of stress in a case that came before the magistrate’s court.
The offence under which CJ was charged was an illustration of the effect of stress. Caught speeding on the way to work, he was asked to blow into a breathalyser (although it was only 8am) but found himself quite unable to blow, only to perform the opposite action and gasp for breath. He was then also charged with the more serious offence of obstructing the police.
Strongly advised to plead guilty, CJ reluctantly accepted that he would gain a police record. It was only after discussing the incident together that it became clear that there had been no wilful obstruction on CJ’s part, on the contrary, he had been struggling to comply with the officer’s request knowing that he had not consumed any alcohol but the harder he tried to provide to breathe into the breathalyser the more impossible it became.
The matter came before the magistrates with a changed plea for the obstruction charge; it was now incumbent on me to show that dyslexia could be a ‘reasonable excuse’ to explain why this involuntary non-cooperation had taken place.
CJ’s performance on the day enabled me to witness how a normally sociable and chatty individual can be rendered almost speechless by the stress of questioning in court. A slight delay between hearing something and understanding it meant that CJ was unable to give an immediate response but suffered a ‘penny dropping’ delay before being able to work out what the question was getting at. Sometimes his answer would reveal that he had missed the point, sometimes pronunciation difficulties would cause him to stumble or he would produce spoonerisms (recalling the crude depiction of dyslexia by the media). Being aware that he was making a poor impression, his stress worsened until he was barely audible.
Moreover, CJ had a short attention span so found it increasingly difficult to concentrate; one saw him narrow his eyes in an attempt to stay focused while he had clearly reached mental overload and was unable to think clearly. Afterwards, although he won his case and was only charged with speeding, CJ could only comment: “I went completely to pot there!”
EXTRACT: Letter from the Driver & Vehicle Licensing Authority (DVLA) to JS
Dear Mr S
We have received a report from the Police which suggest that you may have a medical condition which could affect your ability to drive safely. This means we now need to make enquiries, in the strictest confidence, into your fitness to continue driving. …Will you please fill in and sign the enclosed form…
Extract from the form
3b) DO YOU HAVE EPISODES OF CONFUSION? Yes / No
The case study and its implications were discussed in Group session. Annex 2 sets out related material on good practice and guidance relevant to the justice system.
ANNEX 1. CONFERENCE PROGRAMME AND THOSE ATTENDING
“NEURO-DIVERSITY – MEETING THE CHALLENGE”
CONFERENCE AT RADISSON EDWARDIAN HOTEL, PETER STREET, MANCHESTER, M2
MONDAY 26 MARCH 2007, FROM 10.30 – 16.30
The purpose of the conference is to identify how secure equality and fairness for people in the neuro-diverse community and the autistic spectrum in key sectors of society and the economy – in terms of employment, quality of service and rights as citizens. There will be a particular focus on the most effective ways of getting people in positions of influence to deliver the necessary change and progress.
The actions and recommendations flowing from the conference as well as a record of the key discussions will be published and promoted by the Disability Rights Commission.
The broad programme is as follows:
09.45 | Registration and coffee |
10.30 | Start and introductory remarks from Bob Niven. Plenary discussion – Marketing neurodiversity to the professions: what does preparing for this conference tell us? |
11.00 – 12.45 (with coffee at 11.30) | The individual’s perspective Keynote remarks by members of the DRC Neurodiversity and Autistic Spectrum Action Group. Plenary discussion and Q&As. Chaired by Jo Todd, Director, Key4Learning |
12.45 | Lunch in Alto Terrace Restaurant |
14.00 | Getting through to decision-makers Breakout groups on key sectors (criminal justice, social care and education) |
15.30 | Tea |
15.45 – 16.30 | Report back from Groups, and identification of next steps |
16.30 | Close |
Conference participants
Name | Organisation |
Adrian Whyatt | Department for Work & Pensions |
Alan Shoreman | Remploy |
Ashley Crook | Greater Manchester Dyspraxia Adult Action |
Balwant Subharwal | Disability Rights Commission |
Ben Stone | |
Beverley Hirst | Greater Manchester Dyspraxia Adult Action |
Bob Niven | Disability Rights Commission |
Claire Jones | Disability Rights Commission |
Donna Lawrence | Equalities National Council |
Elizabeth Guest | Leeds Metropolitan University |
Emma Cresswell | Disability Rights Commission |
Eve Rank | DRC Commissioner and DRC Learning Disability Action Group |
Gary Powell | Equalities National Council |
Geraldine Fletcher | Greater Manchester Dyspraxia Adult Action |
Graham Nickson | Disability Rights Commission |
Hayley Lismore | Disability Rights Commission |
Hazel Devereux | Edge Hill University |
Hazel Kirby | Disability Rights Commission |
Heather Haskell | Greater Manchester Dyspraxia Adults Action |
Ian Cruchley | Dyspraxia Group member |
Idem Lewis | DRC Learning Disability Action Group |
Janet Taylor | GMDAA |
Jean McGealy | Parent |
Jo Todd | Key4Learning |
John Hayworth | Greater Manchester Dyspraxia Adults Action |
Jonathan Timbers | Disability Rights Commission |
Katie Grant | Disability Rights Commission |
Lynda Richards | OSCA |
Mari Saeki | National Autism Society |
Mark Shrimpton | DRC |
Colin Revell | Special adviser |
Melanie Jameson | Dyslexia Consultancy |
Mia Rosenblatt | National Autism Society |
Michelle Oakes | Creative Thinkers Network |
Mike Young | Disability Rights Commission |
Mohammed Kebbay | Black Londoners Forum |
Mrs J S Hyman | Greater Manchester Dyspraxia Adult Action |
Munir Lalani | DRC Mental Health Action Group |
Nicola Hallett | Ethical Images |
Orla Reardon | Newcastle City Council |
Paul Davies | Oldham Civic Centre |
Rachael Bolden | Disability Rights Commission |
Sarah Harris | Manchester MRI |
Sharon Patterson | Disability Rights Commission |
Sinead Gordon | Disability Rights Commission |
Susan Garnett | Disability Rights Commission |
Teressa Rayner | GMDAA |
Wendy Aspin | Oldham Civic Centre |
ANNEX 2: GOOD PRACTICE AND OTHER GUIDANCE CONCERNING THE JUSTICE SYSTEM
Melanie Jameson, BA, PGCE, Dip OCR in Specific Learning Difficulties, AMBDA
Dyslexia Consultancy Malvern Email:
dyslexia.mj@dsl.pipex.com
Disability Rights Commission Public Services Conference 26th
March 2007
INFORMATION FOR COURT PROFESSIONALS
DIFFICULTIES ASSOCIATED WITH DYSLEXIA, DYSPRAXIA
AND ATTENTION DEFICIT DISORDER IN RELATION TO THE
COURTS
The following Problem Areas are typically experienced by people with Dyslexia, Dyspraxia and Attention Deficit Disorder in the courts. Coping abilities will vary from person to person.
Difficulties with Memory
• Recall of dates and details (this may give the impression of unreliability)
• Particular problems estimating the passage of time (this could be important when giving evidence)
Communication
• Difficulty in understanding oblique, implied or complex questions
• An inconsequential style of speaking that does not seem to keep to the point
• Over-loud and/or garrulous speech
• Word finding problems, leading to poor self-expression
Attention / Emotion
• A limited attention span leading to mental overload and / or a high level of distractibility
• Particular susceptibility to the effects of stress
Sequencing / Orientation
• Great difficulty presenting a sequence of events in a logical, structured way resulting in possible inconsistencies
• Incorrect sequencing of number and letter strings (such as car number plates)
• Inaccurate references to left and right
Literacy
• Even if reading skills are adequate, skimming through documentation or easily locating a piece of information in a court bundle is very problematic
• The experience of visual stress when reading, leading to a symptoms such as a glare from white paper, the perceived blurring or fading of print, eye strain and continually losing the place; this can be exacerbated by fluorescent lighting
• Erratic spelling and/or awkward or illegible handwriting
Reasonable adjustments should be made as appropriate, in line with the Disability Discrimination Act.
ACCOMMODATIONS BY COURT PROFESSIONALS
When delivering spoken information
• Allow thinking time before pressing for a response.
• Allow the client to ask for questions to be repeated or rephrased without censure or (implied) criticism. The client may need to check understanding by rephrasing questions.
• When reading information out to a clinet, insert pauses after each section to allow the information to be absorbed.
• When providing complex information (such as explaining a person’s rights) first introduce the topic, then give the details, then summarise if necessary.
• Check back to ensure understanding.
• Be aware of a likely limited attention span and the possibility of mental overload.
When delivering / referring to written information
• Be aware that some dyslexic people have considerable difficulty extracting the meaning from written material, despite being able to read adequately.
• If the client suffers from visual stress (see Literacy section on previous page) documentation for study or for reference in court should be adapted. Good practice concurs that written material should be well spaced and of a reasonable font size (not below 12pt) and justified left only. Bright white paper should be avoided in favour of tinted paper, such as pale blue or grey.
• Whole phrases in capital letters are harder to decipher because the normal shape of the word has been obscured.
• Since the effort required to decode text impairs overall comprehension, some clients will fare better if text is read to them. They may need a helper to find the place when extracts from a particular documents have to be located ‘on the spot’.
When requesting information
• Take account of likely difficulty recalling / reciting strings of numbers or letters (number plates, addresses etc.).
• Be aware that, in a stressful situation, recall of times, places and events may not be accurate. Comprehension will become increasingly impaired.
Additional factors
• In many cases, breaks will be necessary to restore concentration at least 10 minutes every 50 minutes of the proceedings. Many people with Specific Learning Difficulties will have reached ‘mental overload’ long before this.
• The stress and distractions of the court, together with the rapid ‘cut and thrust’ of questioning disadvantages people with Specific Learning Difficulties. Most would cope far better if allowed to use a video link, had a friend / ‘responsible adult’ to help locate and digest documentation and were encouraged to take their time in order to provide a thoughtful response to questions.
People with Dyslexia, Dyspraxia and Attention Deficit Disorder vary greatly, so these accommodations are not ‘one size fits all’. Do not make assumptions - individuals should be asked to state their preferences. Reasonable adjustments should be made so that disability does not lead to discrimination in the courts. The website of the Department for Constitutional Affairs contains further information on Disability and the Courts. |
© Jameson 2007
Melanie Jameson, BA, PGCE, Dip OCR in Specific Learning Difficulties, AMBDA
Dyslexia Consultancy Malvern
Email: dyslexia.mj@dsl.pipex.com
Disability Rights Commission Public Services Conference 26th
March 2007
SHORTENED EXTRACT FROM: DYSLEXIA AND STRESS (2nd edition pub 2004 Whurr Publishers) Ed. Prof TRM Miles
Chapter 6 Dyslexia and the Law / Stress factors and the courts
Melanie Jameson
Example of a ‘covering note’ for a plaintiff or witness
Ms P contacted me because she knew that her dyslexia would make it very difficult for her to present her case clearly or respond promptly and effectively to questioning. She feared that the inevitable stress and anxiety would further limit her abilities. After an interview and a study of her dyslexia assessment, it was possible to draw up the document below which could be circulated through her solicitor in advance of the hearing.
HEADED PAPER
To whom it may concern.
Re: Ms P Case reference number: xxx
Ms P experiences certain difficulties which are characteristic of dyslexia, namely:
• a weak short-term memory
• auditory processing difficulties i.e. she experiences a delay between hearingsomething and understanding it
• word naming problems i.e. using inappropriate words at times either in error or because she cannot recall the correct word.
The above problem areas are exacerbated by stress, making aspects of functioning, particularly relating to memory, very difficult.
We are concerned that, if these difficulties are not taken into account during the forthcoming hearing, Ms P will be seriously disadvantaged.
Ms P’s assessment report can be provided on request.
Further information of the implications of dyslexia is included with this document.
[END OF REPORT AND ANNEXES]
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