A self-advocacy guide for autistic adults in Leeds

If you are autistic, struggling with your mental health and need to access support, this guide will clarify what support is available in Leeds; how to access it, and what to do if you have any issues getting the help you need. The guide is from our Mental Health Access Project team.

To open the different parts of this guide, please click on the plus signs to the left of the titles below.

You can self-refer to some avenues of support – you will first need to be registered with a GP, see here for more information about how to do this: https://www.nhs.uk/nhs-services/gps/how-to-register-with-a-gp-surgery/

You can also be referred via your GP if you prefer. This is the standard therapy offered in Leeds:

NHS Talking Therapies

This is a free service you can self-refer to via this website: https://www.nhs.uk/service-search/mental-health/find-an-NHS-talking-therapies-service/ This service is offered by:

Leeds Mental Wellbeing Service (LMWS) Talking Therapies: Offer up to between 12-20 weekly sessions – either one to one or group therapy. These include Cognitive Behavioural Therapy, Interpersonal Psychotherapy (IPT) and Counselling for Depression.

Once you have completed a course of therapy via LMWS, you will need to wait 12 months before you can be referred again. You can access the Primary Care part of LMWS during this time if needed (see below for more info)

You will need to make an appointment with your GP to access the support below. How will depend on which GP surgery you are registered with. Many now use an online system called PATCHS, which you can use to request appointments.

You will need to give some brief information about what the appointment is for. If you are talking to a receptionist over the phone or in person, letting them know it is to discuss mental health should be enough.

Primary Care Mental Health Service

This is offered by Leeds Mental Wellbeing Service, separate to their Talking Therapies offering. For adults with mild-moderate mental health issues.

  • They may offer short term support to help you understand and manage your needs, improve your wellbeing and help you to access other services. Support is offered through Mental Health and Wellbeing Practitioners, usually based at GP surgeries. Some bookable sessions available at Leeds Autism AIM’s Lovell Park hub once a month. Please contact us at [email protected] if you would like to arrange a ‘Helpful Conversation’ (assessment/initial chat) at our hub.

Leeds CMHT – Community Mental Health Team

For adults with substantial and complex mental health needs which cannot be met by other services. They are based in Middleton, Potternewton and Armley. You need to ask your GP to be referred to this service if they feel it is appropriate.

Autism-Specific Counselling

You can apply for funding for this via your GP. The request needs to go to an Individual Funding Request panel for approval, and there needs to be an exceptional need. Usually, this pathway isn’t considered until patients have tried the usual therapies available and these have been unsuccessful.

More info in our Mental Health Guide: https://leedsautismaim.org.uk/wp-content/uploads/sites/7/2023/12/Leeds-Autism-AIM-Mental-Health-Guide-v7-December-2023.pdf

Reasonable adjustments – As an autistic person you are entitled to ‘reasonable adjustments’ to make services more accessible to you. If possible, try to agree these with your GP practice in advance, examples include:

  • Asking for a double appointment for more processing time/time to express your needs during the appointment.
  • Requesting written summaries of appointments afterwards
  • Appointments during quieter times, and/or a quiet area to wait in away from the main waiting room

Write down what you want to say at the appointment, in advance – it is easy to be distracted during the appointment or for the GP to lead the conversation. Think about what the issues are:

  • Are you struggling to carry out your usual day-to-day activities – such as eating, personal hygiene, sleeping?
  • How your mood has been recently, and if you have had any intrusive thoughts or thoughts of harming yourself or others
  • How have your energy levels been, have you been more tired, or hyperactive/have a lot of nervous energy?
  • Have you lost interest in things that you usually enjoy?
  • Have you struggled to concentrate or been easily distracted?
  • Have your speech or actions seemed slowed down at times?
  • Is your current medication losing effectiveness, or making things worse?

You may be asked a set of standardised questions involving the themes above, they are not always appropriate for autistic people or people with ADHD. You do not have to complete these questionnaires if you are struggling with them.

Think about how your current symptoms differ to how you usually are, or when you feel you are in a better place mentally.

You can find a GP appointment planner here: GP Appointment Planner

Take someone with you – Do you have a friend or family member who can attend with you? Sometimes it can help to have someone with you to help advocate for you.

Practice role playing if this is something you find useful, with yourself or a friend or family member. Practice what you are going to say, and try to anticipate what questions you may be asked by the GP, such as:

  • What brings you here today/how can I help you today?
  • What are your symptoms?
  • When did your symptoms start?
  • Have your symptoms gotten better or worse?
  • Do you have a family history of this?
  • What prescription medications do you take (they should have this info available already) Which ones have you been on in the past?
  • Do you use any kind of drugs or alcohol?

Bear in mind that the appointment may be quite different to what you expected.

Make sure the GP is aware of your autism – this needs to be taken into consideration when accessing mental health treatment. Sometimes a diagnosis is on your file but is not ‘flagged’ on the system and may not be noticed.

What has been tried before, what did and didn’t work? Think about the treatment you have had previously, and whether it was helpful or not. Page 11 of the Autism Health Passport has a form you can refer to if needed: https://www.leedsth.nhs.uk/wp-content/uploads/2023/08/nhs-autism-health-passport.pdf

What outcome do you want – Often the GP will ask you what support you need. Have a look at the options available above. You may not know exactly what you need, and if so, the GP should be able to guide you to the right services.

You may also need more specialized support depending on the issues you are facing. You can find more info about other mental health organisations in our Mental Health Guide: https://leedsautismaim.org.uk/wp-content/uploads/sites/7/2023/12/Leeds-Autism-AIM-Mental-Health-Guide-v7-December-2023.pdf

Sometimes, GPs and other health professionals do not have a good understanding of autism and what support is appropriate, or they may be overwhelmed and attempt to gatekeep services. Some issues that sometimes arise, and suggestions about how you could respond:

  • Referring to Leeds Autism AIM for mental health support – Sometimes GPs will refer to us when formal mental health support is needed. Autism isn’t a mental health condition (though these often co-occur) and while AIM does offer mental health peer support groups, we are not a mental health service, and we cannot offer one-to-one mental health support. Autistic adults also often struggle with groups and require one-to-one support.
  • Not able to refer due to autism/too complex – it’s important that services know about your autism and take this into account during your treatment, including making reasonable adjustments and adapting your treatment where appropriate. You should not be refused treatment because you are autistic.

In 2015, the Department of Health and Social Care published the latest binding Autism Act statutory guidance, which states that autistic people should have support adapted to their needs if they have a mental health difficulty.

  • Won’t make adjustments for you, reluctant to give ‘special treatment’ – Reasonable Adjustments are a legal requirement under the Equality Act 2010 to make sure health services are accessible to all disabled people, this includes autistic people.
  • Waiting lists are too long/the service is overwhelmed – You have the right to use NHS services. The services cannot refuse to help you without a good reason.

Some NHS commissioned services have maximum waiting times. You have right to be seen within those waiting times. If you are not, the NHS must take reasonable steps to offer you different options to meet your needs.

  • Unable to submit Individual Funding Requests for mental health issues – if there is a substantial need for the treatment, funding requests can be submitted for mental health treatment in the same way as for physical issues.

Part of Leeds Autism AIM, MHAP is a free project that aims to support and empower autistic individuals in identifying any barriers that may prevent access to community mental health services in Leeds.

By working one-to-one with autistic adults, our project aims to put in place solutions enabling autistic adults to improve their chances of gaining equitable access to the support they need.

More info, including how to self-refer, can be found here: https://leedsautismaim.org.uk/our-services/mental-health-access-project/

Our self-advocacy resources can be found here: https://leedsautismaim.org.uk/our-services/mental-health-equity-project/autism-and-mental-health-resources/