Condition specific organisations

Condition specific organisations


It is not always necessary for people accessing support from organisations in this directory, to have a medical diagnosis of ADHD. Many of the organisations also work with people who are awaiting an assessment, are self-diagnosed or identify as being neurodivergent. 

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.  

Suggested Services:

The Scottish ADHD Coalition was launched in June 2017 to bring together voluntary organisations providing support to adults and children with Attention Deficit Hyperactivity Disorder (ADHD) in Scotland, and their parents, carers and families.

NHS Lothian have developed a self-help resource pack for people with ADHD and associated symptoms

ADHD Europe is a European umbrella organisation which represents self-support patient ADHD advocacy NGOs (Non-Governmental Organisations comprising of charities, family support groups, and other grass roots organisations) within Europe. Moreover, it connects and works with research consortia consisting of scientists, academia, and universities and experienced professionals around Europe. Their website has an ‘Awareness’ section containing ADHD FAQs, Myths & Facts, ADHD in Adulthood and more.

ADHD Foundation advocate for and actively improve the lives of those with neurodevelopmental conditions. In addition to providing training to schools and businesses, they have a wide range of resources about different aspects of neurodiversity and neurodevelopmental conditions across the lifespan.

UKAAN UK Adult ADHD Network For clinicians and professionals. UKAAN provide training & events for health care workers in order to support the implementation of the NICE guidelines.

World Federation of ADHD brings together a professional community and their regional ADHD associations. They disseminate education about ADHD and advocate for patients and their families by enabling world experts to teach clinicians, researchers and other ADHD stakeholders on how to use scientific evidence and clinical wisdom to create better outcomes for people with ADHD.

 For information about ADHD, symptoms, causes, diagnosis, treatment, and living with ADHD go to NHS Inform.

It is not always necessary for people accessing support from organisations in this directory, to have a medical diagnosis of autism. Many of the organisations also work with people who are awaiting an assessment, are self-diagnosed or identify as being neurodivergent.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

For information about autism, autistic characteristics, diagnosis, living with autism, and more facts and myths about autism go to NHS Inform.

Suggested Services:

Autism Understanding Scotland is an autistic-led charity dedicated to helping people deepen their knowledge and understanding of autism and reframe the narrative around autism. The services delivered are open to anyone — autistic, neurodivergent or neurotypical. AUScot is based in Aberdeen, but operate across Scotland.

Different Minds, One Scotland is the first national campaign on autism and was created in response to The Scottish Government Consultation on The Scottish Strategy for Autism, which highlighted the stigma and discrimination that autistic people face. The Different Minds website was created in partnership with autistic individuals, and includes information, lived experiences, FAQs and details of where to get support. They also have a toolkit available, in pdf format, for all stakeholders, to download here

Scottish Government’s Strategy for Autism (2018-2021) can be found here.

Scottish Autism is an organisation dedicated to enabling autistic people to lead happy, healthy, fulfilling lives. They have lots of information on their website, and have a range of services and supports. In particular, they run a regular advice line for autistic people and their families. In Fife, we’re lucky to have the Scottish Autism One Stop Shop is based in Kirkcaldy and is a key organisation that provides support to autistic people, their families, friends and professionals across Fife. The One Stop Shop can offer information and advice about autism and a range of issues, from emotional support to help understanding an autism diagnosis and transitions, as well as signposting to other support services that are available in Fife. The One Stop Shop also provide workshops, training, and events. Click here for current events and training.

National Autism Implementation Team (NAIT) are professionals from Education, Speech and Language Therapy, Occupational Therapy and Psychiatry, who have considerable experience and expertise in working with autistic individuals and neurodivergent people of all ages, their families and others who support them. NAIT undertake research, provide practitioner to practitioner guidance, and facilitate the implementation of evidenced-based actions in the areas of:

  • Education and Inclusive Practice
  • Neurodevelopmental pathways for children, young people and adults
  • Neurodiversity affirming support

They have a wealth of free online resources for parents, educators and health professionals about both policies and practical strategies (such as safe spaces, movement breaks and supporting social communication).

SWAN - Scottish Women’s Autism Network is an autistic-led charity that focuses on raising awareness, information exchange, and improving support for autistic women, girls and non-binary people who self-identify or have been diagnosed as autistic. They provide ways to connect with other autistic people, a pre and post diagnostic group, webinars, meet ups and other supports

National Autistic Society is a charity for people on the autism spectrum and their families. They provide a wide range of online information and supports, guidance and advice that is dedicated to people with autism and the professionals who work with autistic people.

Autism Level Up is a website written by an autistic researcher and an occupational therapist, and has produced a range of useful tools to help autistic people understand themselves (and neurotypical people to understand them). In particular, their tool, The Person In Context (The PIC) aims to help understand and predict whether certain tasks or environments might be particularly challenging (or beneficial) to an autistic person and why.

Middletown Centre for Autism website provides online resources for children and young people with autism, their parents, family members and carers, as well as professionals. There are some excellent resources covering topics such as Life Skills, Building Capacity, Managing Change, Resilience, and Best Practice. The resources contain background information, strategies, case studies and real-life examples. There are videos and links to articles appropriate for as well as additional links to resources and further reading including academic articles.

PEACE Pathway Provides information and resources for people with an eating disorder and autism, their carers and clinicians

Ambitious About Autism (AAA) provide a broad range of online information for young people with autism, aged 16-25, professionals and employers. Training and online toolkits include transition to employment, and toolkits for professionals, young people and employers. AAA work with work with employers and organisations to help increase their confidence in autism and neurodiversity in the workplace and also provide potential employees for vacancies and paid work experience. AAA also run the Ambitious Youth Network for 16–25-year-olds. This service provides staff led, themed, online peer support sessions twice a week via Zoom.

The Curly Hair Project is a social enterprise started by autistic author Alis Rowe. It aims to help autistic people and those around them through providing information, training and resources in an engaging way.

Autism Initiatives are a national charity offering a wide range of support for autistic people, including supported living, school, clubs, activities, work placements and training.

Enable Scotland aim to create an equal society for every person with an Intellectual Disability. They provide a range of services (including training and employability programmes and self-directed support), as well as local programmes such as youth groups, family support and advice, and advice on welfare rights.

The Cerebra Network support children with brain conditions, and their families. They provide advice for parents on a wide range of common issues such as education, sleep, and managing behaviour. They are also a research group which aims to improve the lives of young people with conditions like Intellectual Disabilities, and advocate for disability rights.

Mencap want to help make a world where people with a Learning Disability are valued equally, listened to, and included. They have a wealth of information, a range of services and a free helpline for people with a Learning Disability and their families.

Promoting A More Inclusive Society (PAMIS) support people with profound and multiple learning disabilities (PMLD) and their families. They aim to offer practical help and information, training, and support, in addition to helping families achieve better access to community resources. They also do local and national campaigning on issues relating to people with PMLD. Their website has a range of information and resources, including on posture care and why it can be really important for people with PMLD, information on how to develop a free digital passport to help communicate, and how to access their family support service.

Bild champion the right of people with disabilities by working to develop the skills and culture necessary to understand people’s needs and improve their quality of life. They offer workforce development, training, and consultancy to service providers, and have a range of online resources around positive behaviour support, trauma informed care, policy and guidance documents.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

The Child Brain Injury Trust provide information and support for children who have an acquired brain injury. They also have information about relevant services in your area, and online workshops.

The Brain Charity provide help to anyone affected by a neurological condition (affecting the brain, spine, or nervous system). They have lots of resources, from first diagnosis though to employment, housing, legal advice, mental health, and employment rights.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Cerebral Palsy Scotland advocates for and supports people with cerebral palsy and their families. They organise group activities, share information, and advocate for policy change to improve access to services.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

The Cerebra Network support children with brain conditions, and their families. They provide advice for parents on a wide range of common issues such as education, sleep, and managing behaviour. They are also a research group which aims to improve the lives of young people with conditions like Intellectual Disabilities, and advocate for disability rights.

The Family Fund Provide grants for families raising disabled or seriously ill children and young people. You can read more about their eligibility criteria here and here.

Unique are a charity dedicated to people with genetic conditions associated with learning disability or developmental delay. They provide information, support, and aim to raise awareness of those affected. They have a range on guides on specific chromosome and gene disorders, run a helpline, and online social media groups to connect with other affected people.

Contact a Family provide support for families of disabled children. They provide support to families by providing information, advice, and a free helpline. They run a range of programmes and information sessions, and are involved in campaigning on policy changes.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Developmental co-ordination Disorder (DCD) also known as dyspraxia, is a condition affecting physical co-ordination. It causes a child/young person to perform less well than expected in daily activities for their age and movements can appear awkward.

Developmental co-ordination disorder (dyspraxia) in children - NHS (www.nhs.uk)

In NHS Fife the Children and Young People’s Occupational Therapy (CYPOT) service supports children, young people and their families (CYP&F) to explore ways to minimise the impact of these co-ordination difficulties to maximise their participation in activities they want and need to do at home, school and play.

Law et al 1996

The Occupational Therapy staff will explore with CYP&F how to develop the areas they are finding challenging whilst exploring how the activity or the environment can be adapted to make participation easier. Occupational therapists focus on the outcomes for CYP&F and aim to equip them with the skills and strategies to live full and happy lives.

See the websites below to access a range of activity ideas and strategies that can help with motor co-ordination difficulties.

Life Skills | NHS GGC

Skills for Secondary School | NHS GGC

Resources | NHS Fife

CanChild

CanChild (teens)

We would recommend accessing these resources first to explore what changes and strategies may work at home and school. Fife’s CYPOT service provides a parental advice line for families and an enquiry line for children’s professionals. Calling these lines provides you with direct access to experienced occupational therapists to explore how to work towards achieving health and wellbeing outcomes for children and young people.

We would always recommend accessing the lines first to avoid unnecessary waits for support.

Law M, Cooper B, Strong S, Stewart D, Rigby P, Letts L (1996) The Person Environment Occupation Model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy. 63(1),9-23.

Suggested Services:

The Dyspraxia Foundation aims to increase understanding of dyspraxia, especially among health and education professionals. Their website has a wealth of advice aimed at teenagers, adults, and parents and carers. They also run a regular helpline.

 

 

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Raising Awareness of Developmental Language Disorder provide information, videos and resources on Developmental Language Disorder. They work to raise awareness of DLD and its impact, and provide people with evidence-based information about DLD.

Speech and Language UK is the children’s communication charity. They aim to support children to have the communication skills they need to achieve their full potential, by offering practical advice to parents, outreach programmes, and training for professionals. They have a free enquiry service, and a range of resources forr parents.

DLD and Me have the goal of raising awareness of developmental language disorder and to offer support and resources for parents, teachers, and individuals impacted by DLD.

AFASIC provide support and information for families with children and young adults who have Speech, Language and Communication Needs (SLCN) with a focus on Developmental Language Disorder

The Royal College of Speech and Language Therapists (RCSLT) have expert information on Developmental Language Disorder, and what Speech and Language Therapists can do to support young people with DLD and their families

NHS Fife Speech and Language Therapy Team have a wealth of information and online resources, including information about their parent advice line, and how to access the service.

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Dyslexia Scotland are working to create a dyslexia-friendly Scotland, allowing all people with dyslexia to realise their potential. They have a dyslexia helpline, information on dyslexia, online dyslexia training, and have dyslexia-relevant information on topics such as learning to drive, mental health, and careers.

British Dyslexia Association aims to enable everyone with dyslexia to be acknowledged, accepted, and empowered by raising awareness of dyslexia in education and the workplace, campaigning, and empowering dyslexics to change society for the better. They also have a range of information and advance for parents, adults, teachers and employers on dyslexia, dyscalculia, and neurodiversity

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Down’s Syndrome Scotland provide life-long support and information to ensure that all people with Down’s Syndrome in Scotland reach their fullest potential. They have lots of information for parents and carers of both children and adults with Down’s Syndrome, and supports for both families and people with Down’s Syndrome themselves.

Down’s Syndrome Association Are a national group focused on improving the quality of life for people with Down’s Syndrome, and promoting their right to be included fully and equally with others. They run a helpline, provide information, and campaign on national issues affecting people with Down’s Syndrome

Ups and Downs is a Facebook-based support group for families and children with Downs Syndrome in Fife. They also run regular local events and conferences

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Adoption UK FASD Hub provide a support service for parents/carers (adoptive and biological parents, foster carers, kinship carers and stepparents) across Scotland who live with children, young people and young adults who have a history of prenatal alcohol exposure (PAE), with or without an FASD diagnosis. It includes information, advice, support, training, resources, and signposting provided through a variety of direct and indirect contact points. The service also provides a point of reference and training for professionals who work with and support these families within Scotland.

Fetal Alcohol Advise Support and Training Service is funded by the Scottish Government to provide and facilitate training consultation and research in order to enhance the capacity, knowledge and confident of Scotland’s Health and Social Care workforce in their work with those affected by Foetal Alcohol Spectrum Disorders. They are primarily aimed at professionals, and work in partnership with Adoption UK’s FASD Hub

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Enable Scotland aim to create an equal society for every person with an Intellectual Disability. They provide a range of services (including training and employability programmes and self-directed support), as well as local programmes such as youth groups, family support and advice, and advice on welfare rights.

The Cerebra Network support children with brain conditions, and their families. They provide advice for parents on a wide range of common issues such as education, sleep, and managing behaviour. They are also a research group which aims to improve the lives of young people with conditions like Intellectual Disabilities, and advocate for disability rights.

Mencap want to help make a world where people with a Learning Disability are valued equally, listened to, and included. They have a wealth of information, a range of services and a free helpline for people with a Learning Disability and their families.

Promoting A More Inclusive Society (PAMIS) support people with profound and multiple learning disabilities (PMLD) and their families. They aim to offer practical help and information, training, and support, in addition to helping families achieve better access to community resources. They also do local and national campaigning on issues relating to people with PMLD. Their website has a range of information and resources, including on posture care and why it can be really important for people with PMLD, information on how to develop a free digital passport to help communicate, and how to access their family support service.

Bild champion the right of people with disabilities by working to develop the skills and culture necessary to understand people’s needs and improve their quality of life. They offer workforce development, training, and consultancy to service providers, and have a range of online resources around positive behaviour support, trauma informed care, policy and guidance documents.

 

This is a working document so that new resources and services can be added and current information amended or removed for services that may no longer be available.

Suggested Services:

Tourette Scotland aim to improve the lives of those living with Tourette Syndrome in Scotland, and their families and associates. They provide information, groups, and run regular events. They also run a support group in Fife which has monthly meetings, days out, residential weekends and more.