What can I do if formal support is not offered or is not enough
The formal support you or your child are entitled to after a diagnosis will depend on your specific needs. However, it is unfortunately common for support not to be offered, or for people to feel the support offered is not enough to meet their needs. This page explores the steps you can take to ask services to reconsider the support needed.
Formal support not being provided for an autistic adult or child
Having an autism diagnosis does not mean you are automatically entitled to formal support from professionals. Instead, support is generally based on an assessment of your specific needs in areas such as education, employment, social care and welfare benefits. For more information about this, visit our page, Formal support following an autism diagnosis.
If you have had an assessment for, or have requested, support and this has not been provided, or if you feel the support offered is not enough, there may be further steps you can take to ask services to reconsider the support needed. You may also be able to access informal support, such as local or online support groups.
If processes followed by health, social care or education professionals have not been adequate or guidelines have not been followed, you can raise a concern. The process for this will depend on your situation and where you live. If you disagree with a decision made concerning benefits or are unhappy with the support provided by your employer, there may also be actions you can take to complain or have your support needs reconsidered. These are explored in more detail in the following sections.
Health services
If you have a complaint following the diagnostic assessment or at any stage in the referral or diagnosis process, you can follow the complaints procedure for your local area. Complaints should usually be made within 12 months of the issue arising or being aware of the problem.
If you live in England, you can complain to the Integrated Care Board (ICB): details on how to complain and how to contact your ICB can be found on the NHS England website. Those with a complaint may consider using the Patient Advice and Liaison Service (PALS). This service aims to help people resolve their disputes with the NHS and is available in most hospitals throughout England.
In Scotland, complaints should be made to the local health board. Information about how to complain and details of health boards can be found on the NHS Inform website. The Patient Advice and Support Service (PASS) is available to help people understand their rights, raise concerns and give feedback about NHS treatment.
The NI Direct website provides information about making a complaint or raising concerns about health and social care services in Northern Ireland. The Patient and Client Council can listen to concerns and provide information and advice.
If you live in Wales, the complaints procedure and who to contact is outlined on the Welsh Government website. LLais provides free and confidential complaints, advocacy and support.
Independent advocacy services are available throughout the UK. These can help people understand their options and legal rights and ensure their views, feelings, and wishes are communicated effectively. You may find a suitable advocacy service by searching for advocacy services in your local area in our Autism Service Directory.
VoiceAbility has an NHS complaints self-help toolkit that may be useful to help you use the NHS complaints process.
The process will differ if you have used a private health provider for diagnosis. There may be complaint or feedback processes outlined on the provider's website with an option to provide your feedback directly, or you may be able to make a complaint to the private healthcare provider. If you feel your complaint hasn’t been handled correctly, you could contact the Independent Sector Complaints Adjudication Service (ISCAS) to determine if the provider is covered by their service. They have a Complaints Code of Practice, which includes an independent adjudication service to help manage and resolve disputes.
Social care
A complaint can be made if a local authority (LA) or trust has refused to assess the needs of an adult or a child who has been unfairly treated or has problems with the services they are receiving. Your LA or trust will have a procedure to deal with complaints about social services. You can make your complaint to anyone who works for social services. They must record the complaint and inform the LA’s or trust’s Complaints Officer.
In most areas, the complaints procedure has three stages:
Stage 1
Try to sort things out with the service or team you are complaining about. The Local Government and Social Care Ombudsman has some tips for making a complaint.
Stage 2
If you are unhappy with the response to your initial complaint, you may ask the organisation to investigate further. This usually involves a different department or person considering the complaint.
Stage 3
If your complaint relates to something that has gone wrong, you can try raising a complaint with:
- the Local Government and Social Care Ombudsman in England
- the Scottish Public Services Ombudsman (SPSO) in Scotland
- the Northern Ireland Public Services Ombudsman in Northern Ireland
- the Ombudsman in Wales.
You can find further information on the Citizens Advice website.
Employment
Several specialist employment organisations have helplines you can speak to if you are mistreated or having difficulty accessing work. These offer free advice on employment rights, rules, and best practice.
The Equality Advisory and Support Service (EASS) has a helpline that advises and assists individuals about equality and human rights issues, including disability discrimination.
The Disability Law Service (DLS) provides free legal advice on employment.
Benefits
If you think a decision about your benefits is wrong, you can challenge it by asking for a 'mandatory reconsideration', where the government department that issued the decision reviews it to see if they want to change it. Once they have reconsidered, they give you a new decision you can appeal against. This differs slightly for Housing Benefit reviews. You can find further information about this on our appeals and reconsiderations page.
If the outcome of the personal independence payment (PIP) assessment does not accurately reflect your needs, can follow the appeal and tribunal process to try to overturn this decision.
Challenging the decision is a two-stage process: first, you have a 'mandatory reconsideration' and then an appeal. There is further information on our page about Challenging a PIP decision.
School education
If parents and carers feel their child is not receiving the support they need at school, the first step is to speak to school staff about your concerns. If this does not help to resolve the issue, you can consider following the school’s complaints procedure or contacting your local or education authority.
Depending on the nature of your concern and which nation of the UK you live in, you may be able to access independent adjudication or mediation services and, ultimately, an appeal tribunal. Further information offering nation-specific advice can be found on our page resolving differences in education.
Further or Higher education
If you are not receiving the support you need, or feel you’ve been discriminated against, in further or higher education, you can:
- ask if you can discuss the situation with your tutor or disability advisor
- contact the Equality Advisory and Support Service for advice
- follow the written complaints procedure. Student support services and student unions may be able to help
- access conciliation and mediation services. For higher education in England or Wales, it’s the Office of the Independent Adjudicator (OIA). In Scotland, it’s the Scottish Public Services Ombudsman. For both further and higher education in Northern Ireland, it’s the Equality Commission for Northern Ireland. For further education in England, it’s the Education and Skills Funding Agency
- make a claim of unlawful discrimination to the county court in England and Wales or the sheriff court in Scotland.
Further information can be found on our disability discrimination in further and higher education webpage.
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- Autism Services Directory: for services and support
- Branches: offering support, information and social activities for autistic adults, children and their families in their local areas
- Community: our online community is a place for autistic people and their families to meet like-minded people and share their experiences
- Lorna Wing Centre: offers a range of specialist diagnostic and assessment services for children, young people and adults
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Health and Social Care:UK wide:
England:
Scotland:
Northern Ireland:
Wales:
Employment:- PLUSS
- Disability Employment Advisor at Job Centre Plus
- Government Disability Confident Scheme
- Advisory, Conciliation, and Arbitration Service (ACAS)
- Disability Law Service (DLS)
- Equality Advisory and Support Service (EASS)
Welfare Benefits:
School Education
England:- Special Educational Needs and Disabilities Information Advice and Support Service (SENDIASS)
- Independent Provider of Special Education Advice (IPSEA)
Wales:
Scotland:
Northern Ireland:
Further or Higher Education:
- Equality Advisory and Support Service (EASS)
- University and College Admissions Service (UCAS)
- Disability Rights UK
- Equality Commission for Northern Ireland
Complaints
England and Wales:
Scotland:
Northern Ireland:
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Title: What do we do?
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Title: “Exploring Being Autistic: An Autistic-Led Programme for Supporting Newly Identified or Diagnosed Autistic Adults”
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Title: “Autistic people should be able to diagnose THEMSELVES in some cases because 'you don't need a doctor to tell you who are you', top expert says”
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Title: Autistic people should be able to diagnose THEMSELVES in some cases because 'you don't need a doctor to tell you who are you', top expert says
Source: The Daily Mail
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Title: My autism diagnosis: The long journey to acceptance
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Title: How to explain autism to friends and family
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Title: My advice on explaining your autistic needs
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Title: Life after autism diagnosis – what next?
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Title: Recently Diagnosed as Autistic and Realizing My Own Prejudice
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Title: 5 observations on my late diagnosis
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Title: Reactions to Late Autism Diagnosis
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Title: Isolation & Self-Help After an Autism Diagnosis
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Title: ADULT ASD: MOVING FORWARD AFTER DIAGNOSIS
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Title: ADULT ASD: DISCLOSURE
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Title: What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism
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Title: How my autism diagnosis helped me to open up
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Title: The new autistic adults – how a diagnosis saved his life
Source: Adults with AutismAuthor: Steve Slavin
Title: Why I No Longer Tell People I’m Autistic
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Title: Autism diagnosis aftermath
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Title: Autism Diagnosis can be life changing
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Title: Why my autism diagnosis was just one step on my journey
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Title: What I Wish the Doctors Told You at Your Child’s Diagnosis
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Title: No One Knows Your Autistic Child’s Future
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Title: 5 Important Steps to Take After Your Child’s Autism Diagnosis
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Title: What would I go back and tell myself when my kids received an autism diagnosis
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Title: They never told me THAT at diagnosis!
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Title: An Adult Autism Diagnosis at 37
Source: Someone’s MumAuthor: Purple Ella
Title: Diagnosis Doubt
Source: YouTube
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Title: Four Things After A Late Autism Diagnosis
Source: YouTubeAuthor: Yo Samdy Sam
Title: Getting an adult autism diagnosis – is it worth it?
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Title: Getting an Adult Autism Diagnosis | AUTISM IN GIRLS
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Title: Late Autism Diagnosis: Re-Evaluating Your Life and Re-Discovering Yourself!
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Title: Why I’m Proud to be Autistic: Finding the Beauty in Divergence
Source: Artfully Autistic on MediumAuthor: Amy Richards
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Source: Artfully Autistic on MediumAuthor: Thaddeus
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Our online community is a place for autistic people and their families to meet like-minded people and share their experiences.
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Our specialist diagnostic and assessment service for children, young people and adults.
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The UK’s most comprehensive directory of services and support for autistic people, their families, and the people who work with them.