Your Autism Rights

YOUR AUTISM RIGHTS (UK)

ADULTS

The Autism Act 2009 (England) entitles you to an assessment of ASC if you have some traits/difficulties in relevant areas. Many adults find that their GP fobs them off, or have nowhere to refer you, but you must insist on your rights. The Autism Act is law! Stand your ground against a GP who says that there is no funding or that you don't need a diagnosis, both are wrongful excuses and they must refer you out-of-area if there is no local assessment centre.

The Autism Strategy 2010 (England) further cements the rights of the Autism Act and makes specific what health authorities must do.

"Think Autism" the Government campaign following the Autism Strategy ...shouldn't have been needed but because, despite the aforementioned Act and Strategy, authorities have still not been doing what they should, this campaign reminds authorities of their responsibilities.

But - people have to be able to access diagnosis in the first place to access their rights! The NAS confirms what I have long suspected. There is a deliberate agenda to not diagnose autistics (forewarned is forearmed, in case you encounter diagnostic failure):

The above screenshot was luckily taken before it was referred to in several places and then subsequently mysteriously vanished off the NAS web page in June 2016. (Original page still available here however: http://tweb-cms.autism.org.uk/about/diagnosis/criteria-changes.aspx). Someone whose needs are under-assessed will most likely be deemed as not needing diagnosis and having sub-clinical traits, so enabling withholding of diagnosis.

Here is the DoH Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy. It applies to all local authorities, NHS bodies and NHS Foundation Trusts and replaces the 2010 statutory guidance. It relates to England only. Where the guidance say bodies “must”, it refers to legal duties imposed upon these bodies. Where the guidance says bodies “should”, it refers to statements of policy or information with regard to the way in which bodies should exercise their functions. They may depart from this, but only if they can demonstrate a good reason for doing so. Lack of sufficient resources would not necessarily constitute a good reason (but I can imagine all sorts of excuses being concocted to avoid providing what they should). Shockingly: (1) provision of a diagnostic pathway, (2) adhering to the NHS NICE Guidance on assessing adults with autism and (3) triggering of post-diagnostic assessment of needs, only come under the "should" category, which means, despite the Autism Act 2009, nobody will be held to account if they don't ensure these are in place and working for all relevant adults. So misdiagnosis or missed diagnosis, which are all too common, will keep on happening. What incentive will there be when autism is the most expensive diagnosis to support and bodies are trying to save money?

NHS National Institute for Health and Care Excellence (NHS NICE) Autism Guidelines:

Guidelines for recognition, referral, diagnosis and management of adults on the autism spectrum.

If any professional questions why an adult with autism needs a diagnosis, the following article alone is enough to explain why http://www.theguardian.com/social-care-network/social-life-blog/2015/nov/11/autism-aspergers-older-ageing-scared. Because even for those with children and spouses, children grow up and move away, spouses divorce and die and who is left to support an older adult with autism?

How does the undiagnosed autistic person who struggles socially and with accessing care get help? Support is often diagnosis related and high-functioning adults without a diagnosis, will not have the understanding of professionals, that will gain them the right support. The likelihood that autism-centred social care is needed, will go up exponentially as the person ages. Will they end up the "mad" old man who waves noisy children away from outside his house and who is known as a weirdo, will they be the "loony" old lady who has 20 cats and a house full of cat faeces? Will they be so isolated because they can't handle going to old peoples' clubs, that they will become neglected and die alone? Who will care? Social and health care needs to be accessible for autistic adults and without a diagnosis, what they need may be unreachable for them: "A manual for good social work practice Supporting adults who have autism" https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/467392/Pt1_Autism_Learning_Materials_Accessible.pdf

Here are plenty more reasons why you need a diagnosis, to help you formulate your response to resistant professionals:

Information regarding the negative effects of not having a diagnosis of Asperger's until well into adulthood http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

The Autism Support Network's list of reasons that adults seek an AS diagnosis http://www.autismsupportnetwork.com/news/top-10-reasons-adults-seek-asperger-syndrome-diagnosis-autism-29283298

Quotes from the NAS

"Reasons why you might need a diagnosis

Diagnosis in adulthood can be a mixed blessing. Some people decide that they are happy with self diagnosis and decide not to ask for a formal diagnosis. For people that do get a formal diagnosis, there are a variety of benefits.

Understanding Yourself

Lots of the people we speak to have suffered from mental health problems and/or have been misdiagnosed with mental health problems like schizophrenia. They have known that they have specific difficulties for a long time without being able to explain them. A formal diagnosis can be a relief because it allows you to learn about your condition and understand where and why you have difficulties for the first time.

Gaining the understanding of others

So many people suffer the consequences of being constantly misunderstood. Often the fact that someone has autism can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties, it’s much easier for them to empathise with you.

Finding services to suit your needs

Some adults with autism may need support with day-to-day living (many others have no support needs). But this support may be given by people who don’t understand autism and the specific difficulties associated with it. With a diagnosis, you can get support from autism-specific services like our Prospects Employment Service."

The NHS' own page on autism diagnosis explains why it is needed http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Diagnosis.aspx

A psychology article explaining reasons for diagnosis: http://www.sacramentopsychology.com/index.php/articleslayout/54-aspergers-syndrome/90-why-is-it-important-to-identify-aspergers-syndrome-in-adults.html

Then of course there is also that a diagnosis is a protected disability and this entitles you to reasonable adjustments in education, employment, accessing healthcare and more - plus you can take part in autism research as a diagnosed autistic participant if you choose.

As an autistic person, you have a legally recognised disability which means that you have rights to "reasonable adjustments" in law according to the Health and Social Care Act 2008 and the Equality Act 2010. These include from your employer and also from any public body, which includes your GP, the council etc. These might include things like reduced lighting at work, flexible appointment times with your GP or access to electronic communication such as email and/or fax instead of the phone with your GP. They have a legal duty to make anticipatory adjustments. They cannot refuse you in law, even if they try to (which they most likely will), or are ignorant of the law. Even without autism, just suffering mental ill-health (which includes anxiety and/or depression) you are still entitled to these reasonable adjustments with public bodies. Here is the relevant part of the Equality Act 2010 (preceded by the Disability Discrimination Act 2005). Be aware that if you have a legal case in which you need to cite the Equality Act 2010 that you may need to also cite the Disability Discrimination Act 2005 specifically, in order to cover all aspects of discrimination to strengthen your case. It has happened that a person with Asperger's went to employment tribunal and lost because their lawyer failed to do just that! Don't lose through loopholes or legal pedantry!

National Autistic Society (NAS) information on assessment and diagnosis as an adult.

If you suspect you have Asperger's you can take this scientifically validated test (shortened version of the AQ50 and which GPs can use as a screening tool) and print the results and take them to your GP to request referral if you score for possible Asperger's: http://docs.autismresearchcentre.com/tests/AQ10.pdf There is also adult onset autism which would need to be borne in mind when taking a childhood history in your assessment if this applies to you.

Advice from Jane Spencer, Ministerial Correspondence and Public Enquiries, Department of Health (August 2012)

"Patients currently have the right to choose the organisation that provides their treatment when they are referred for their first outpatient appointment with a service led by consultants, and to information to support that choice. Any choice beyond this is at the discretion of the individual primary care trust (PCT).

You may be aware that the Government has made a number of commitments relating to extending the choice of treatment and provider in the vast majority of NHS-funded services. Views on implementing these commitments were collected in the subsequent public consultation Greater choice and control. The formal responses to the consultation are being published on the Department of Health website at www.dh.gov.uk and can be found by typing ‘Greater choice and control’ in the search bar*.

The NHS Standard Contract states that providers must accept referrals for any patient who chooses that provider and whom it is within their clinical competence to treat." *This seems to be the document referred to: https://www.gov.uk/government/publications/operational-guidance-to-the-nhs-extending-patient-choice-of-provider

The Welsh Assembly Government. Health in Wales (Wales NHS), information on autism including a link to the 'Autistic Spectrum Disorder (ASD) Strategic Action Plan for Wales'.

The Scottish Autism Strategy. and Scottish SIGN Guidance.

Celtic Nations Autism Partnership. Includes links to Autism NI (Northern Ireland's autism charity), Autism Cymru (Wales' national charity for autism), autism.ie (the Irish society for autism) & Scottish Autism.

Parents of autistic adults' rights explained by the National Autistic Society (NAS).

Statutory guidance on provision for NHS and local authorities for adults with autism.

Benefits information from the National Autistic Society (NAS).

NHS Continuing Care for those assessed as having a primary health need requiring ongoing care.

CHILDREN

NHS National Institute for Health and Care Excellence (NHS NICE) Autism Guidelines:

Guidelines for recognition, referral and diagnosis of children and young people on the autism spectrum (NB these do not yet incorporate advice about differential recognition of PDA).

If you are a parent of a child who you suspect has an ASC, but has some apparent differences, be aware that there is another ASC called pathological demand avoidance (PDA), which may not be identified by the standard autism assessment tools and methods. If your child is very oppositional, extremely anxious, very frequently role plays characters and fantasies, makes excuses and incapacitates self to avoid day-to-day demands s/he could have PDA. Complete the PDA extreme demand avoidance questionnaire here: http://tinyurl.com/qb2nbvh and read the information on this website: http://www.pdasociety.org.uk/what-is-PDA If you feel it is a good fit for your child, speak to your GP about an ASC referral to a centre with specific expertise in PDA (which can be out-of-area if none exists locally). There is also a condition called oppositional defiance disorder which autistic and non-autistic children can have, there is a grey area needing further research as to whether PDA is in fact ASC+ODD, because having more than one condition, means one likely influences the presentation of another and there is a lot of overlap between PDA and ODD traits.

There is a PDA information booklet for professionals here: http://www.pdasociety.org.uk/professionals/awareness-matters-booklet and information on diagnosing it here: http://www.pdasociety.org.uk/professionals/diagnosing There is little knowledge yet about PDA out there amongst professionals, it's not yet in the diagnostic manuals, so don't be surprised if you face obstructiveness. The NAS does run training courses on recognising PDA for professionals and it is perfectly possible to receive a clear diagnosis of PDA as an ASD sub-type (as opposed to a label of autism/Asperger's with PDA traits), as stated by Dr Judith Gould of the Lorna Wing Centre: “Being in a diagnostic manual is not a pre-exquisite required for diagnosis and should not prohibit a clinician from diagnosing PDA as stated by Dr Judith Gould at the Cardiff PDA Conference 2014. Being in a diagnostic manual simply means that finally research has finally caught up, but this can take decades.”.

Some children do also have an overlap profile of either HFA-PDA or AS-PDA, but it's important that professionals do not avoid the correct diagnostic finding based on misconceptions of ability to diagnose PDA standalone, if that is what the child has. Advice on behaviour management and educational support differs for PDA from that for typical autism.

NHS information on assessment of need as your autistic child's carer.

GENERAL INFORMATION

The NHS Constitution.

Your right to a second opinion on the NHS.

NHS choices regarding treatment, hospital, clinician etc. Here is NHS Choose & Book.

NHS statement on referrals entitlement here.

Check (and leave) reviews of your clinic or hospital before you choose, this site appears to be independent. You may also read and leave reviews here by selecting your place of treatment from the menu but this is the NHS' own online review system and they may veto reviews they don't want published. There is a trial NHS review service underway but only some areas are covered and when it is up and running a link will be posted.

Despite the problems some have encountered, according to it's own rules, the NHS does and must, recognise private assessments as valid and offer you the same autism care pathway as if you had received an NHS diagnosis, so do challenge refusals when they happen. NHS NICE Guidelines also do not state that your diagnosis must be an NHS one.

http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96&SubCategoryID=226

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_096576.pdf

"Private consultations

If you’ve had a private consultation for tests and diagnosis, you can still have treatment on the NHS. Your position on the NHS waiting list should be the same as if your original consultation was on the NHS."

NHS Patient Advice and Liaison Service (PALS) for making complaints and getting assistance. Be aware that they are part of the NHS so are not independent and also they do not investigate your complaint, all they do is liaise between you and the department you are complaining about, so you will be no better off than if you just complained to them direct.

If PALS do not uphold your complaint, you can escalate your complaint to the Parliamentary Health Service Ombudsman (PHSO). Be aware that the PHSO is not regulated and is a government body, so again, is not independent. For anyone who has not had fair resolution through the PHSO, you may want to look at this website to see the facts about how PHSO is performing: http://www.phsothefacts.com.

You can also involve Healthwatch who are the watchdog for health and social care in the UK. If you have a complaint about a GP you can contact the GMC. Poor NHS service can also be reported to the CQC. Please be aware that if you have a complaint about a GP, and you feel that complaining direct will not resolve matters fairly, you can complain about your GP to NHS England instead. NHS England will not investigate a complaint if you have already complained direct to the service provider. You can also complain to your local CCG who will collect information on problems with local services.

If all else fails, if the NHS has failed you diagnostically and you have had no joy from following the complaints procedures, you can submit a claim to the NHS Litigation Authority: http://www.nhsla.com/Claims/Pages/Home.aspx. If you have had to pay for private assessments and supports due to NHS failures, keep all the evidence of this to include copies with your claim. Also, be aware that you have the right to obtain yours or your child's copy health records from the NHS, including your GP. There will be a charge, with a maximum amount chargeable no matter how thick your files are. This can be a valuable exercise in unravelling what has gone on behind the scenes and to obtain evidence which can be used in your complaint or NHS Litigation Authority claim. Important! Ensure you specifically request all records in all formats, including (but not necessarily limited to) emails, handwritten notes, telephone call logs, or they will be likely to withhold them by default.

You can also request copies of yours or your child's social care records, should you do so, ensure to ask for copies of running sheets in addition to the above record types. The only circumstances your files can be withheld from you is if you or your child are at risk from serious harm if you see them. This is not an arbitrary blanket get-out clause, they must have evidence that this will be the case, such as an up-to-date opinion from a qualified psychiatrist in your case, or serious child protection concerns with your child that by seeing your records they have good cause to believe it could put them at serious risk of harm. You can arrange an appointment to view the records if you do not wish to request copies, and make your own notes, do not allow them to hurry you! If necessary take along a friend or advocate.

Write to your local councillor: http://www.writetothem.com/, or your MP if you are having difficulties and cannot get resolution via the above options: http://www.theyworkforyou.com/. There is also the Lords but they have no duty to reply to members of the public: http://www.writetothem.com/lords.

You have a right to an advocate if you have autism and/or mental ill health. Mind.org.uk can help with this and it is free of charge. The NAS also has a page on advocacy services, but those are not free services.

Make sure you get the right support from the services as an autistic person, Department of Health document. Here is the NAS hospital passport for all autistic adults and children to use when they need to visit hospital.

The NAS have a self-advocacy booklet which you can use for all your appointments to say what adjustments you need (scroll down to bottom of NAS page in link). Also, here is further information on reasonable adjustments you are entitled to in the NHS, education and the workplace:

Briefing - Making Mental Health Services More Accessible for Autistic People http://www.nhsconfed.org/~/media/Confederation/Files/Publications/Documents/mhn-briefing-255.pdf

Mental Health Act 1983 - Code of Practice https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/435512/MHA_Code_of_Practice.PDF

Briefing - Improving Services for Adults with Autism http://www.nhsconfed.org/~/media/Confederation/Files/Publications/Documents/Briefing_202_MHN_autism.pdf

Making Mental Health Services More Accessible for Learning Disabled or Autistic People http://www.nhsconfed.org/~/media/Confederation/Files/Publications/Documents/mhn-briefing-255.pdf

reasonable adjustments in education and the definition of disability and reasonable adjustments http://www.autism.org.uk/about/student-life/choosing-school/england/discrimination.aspx

reasonable adjustments by employers http://www.equalityhumanrights.com/private-and-public-sector-guidance/employing-people/work-place-adjustments/reasonable-adjustments-in-practice

NAS information on Assessment of needs for adults with autism.

Direct Payments from the NHS.

EDUCATION INFORMATION FOR PARENTS OF ASC CHILDREN:

ACE Education Advice & ACE Education Training an educational advice site for parents of SEN children.

Educational Equality a site for parents of children with SENs.

IPSEA an advice website for parents of children with SENs, contains model letters and advice on how to take action over EHCPs.

Find your LA here to request an EHCP assessment: http://local.direct.gov.uk/LDGRedirect/Start.do?mode=1

Government information about SEN.

National Parent Partnership (now renamed 'Information Advice & Support Services Network' - IASS) advice and support to parents of children with special needs.

SEN transport - case law and information on your child's rights: