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How to request an autism assessment

If you believe you or your child may be autistic, you may decide to ask your GP for a referral for an autism assessment. This page explores how to do this, how to prepare, and some of the barriers people can face in getting a referral.

Please note:

This page contains examples of support, and information about specialist organisations, that comes from our direct experience of helping autistic people and their families, in addition to information based on a review of the evidence as described on Our advice and guidance content process page. The additional resources are presented in purple boxes.

Who do I speak to about getting an autism assessment?

After noticing signs that you or your child may be autistic, you may want to discuss this and seek the support and advice of your GP or other relevant health care or education professional, including finding out what the next steps are in your area.

If the professional recognises that you or your child may be autistic, they will make a referral for an assessment or provide you with information about your local referral process, which for children in some areas may be via school or Child and Adolescent Mental Health (CAMHS) services. A referral is when specialist diagnostic services are formally made aware that a patient may be autistic and requires an assessment.

If a child or young person is being referred for an assessment, they should be involved in discussions about the process, understand what being autistic means and agree to the referral. 

If you feel apprehensive about approaching your GP to discuss this, some things that may help include: 

  • taking a partner or friend to support you during the appointment
  • only discuss your thoughts around autism; a further appointment should be made for any other topics if necessary
  • take some notes or a list of signs you have noticed in yourself or your child that suggest you or they may be autistic (see our resources below)
  • prepare some questions to ask your GP.

Resource: Questions you could ask at your GP appointment

You can use this resource when asking your GP to refer you or your child for an autism assessment. 

Download: Questions you could ask at your GP appointment

Who will I be referred to for an autism assessment?

A diagnosis can only be made by a specialist autism diagnostic service. If you or your child show signs that you may be autistic, your GP or medical practitioner should refer you to someone who can carry out an assessment. A diagnosis will only be given following an assessment process, which can take some time to complete. You can read more about the assessment process on our page What happens during an autism assessment. 

The service you will be referred to will depend on:

  • your age
  • where you live
  • whether you have any other diagnoses or conditions (such as mental health issues or learning disabilities)
  • if you have exercised your 'Right to Choose' in England, it will depend on your chosen service.

What will be included in the referral letter? 

A formal referral will usually involve a letter or form being sent from your GP, health care practitioner or educational professional to the diagnostic service that will carry out the assessment. Your GP is the primary route for referral although for some children and young people, in some parts of the UK, it may be an educational professional who makes the referral. 

The process for referrals varies depending on where you live. There is guidance throughout the UK that should be followed when a person is referred for an autism assessment: 

A copy of the referral letter should be shared with you or the parents of the referred child. If this is not provided, it can be requested by asking the GP or the person making the referral directly, or making a request for the person's medical records or education records if the school made the referral. Medical records will be provided digitally or in print. 

If the person making the referral thinks the signs shown may be something other than being autistic, they may suggest other assessments alongside or instead of a referral to an autism diagnostic team. For example, if someone has difficulties completing activities that require hand or body movements they may be referred to an Occupational Therapist. If they have delayed language or speech sound difficulties they may be referred to audiology or a Speech and Language Therapist.​​
 

What is 'Right to Choose'?

In England, patients have a legal Right to Choose who provides their healthcare, including who carries out an autism assessment. GPs should offer you the option to choose a service to carry out the assessment. 

To be eligible for the 'Right to Choose’, the person should: 

  • be registered with a GP in England
  • must not be a prisoner
  • must not be detained under the Mental Health Act
  • must not be a serving member of the armed forces
  • must not be needing a test urgently or have been admitted to hospital. 

The service you request must be providing NHS services in England. 

GPs should always offer the 'Right to Choose' before they refer to a service. This includes providing information about the services available and helping you decide which service is most suitable. Some people prefer the 'Right to Choose' as they may have to wait a shorter time to be assessed, or the provider's location may be more convenient than other alternatives. 

‘Right to Choose’ is not available in Wales, Northern Ireland or Scotland.
 

Can I refer myself or my child for an autism diagnosis, or does my doctor have to refer me?

Referrals for a diagnostic assessment for autism are usually made by a GP or another health care professional working within the NHS, although in some cases education professionals may make the referral. 

Self-referral is offered by some, but very few, autism diagnostic services in the UK. Most NHS assessment pathways require a referral from a professional. Self-referral will usually involve completing a form with some personal details and reasons for the request for assessment. Local carer and autism support groups should have details of the process for self-referral in their local area.
 

Our Clinical Director explains

Can I have a private assessment?

In addition to NHS assessments, there is also the option to seek a private or independent assessment. You do not need a referral from a GP or other NHS health care professional to request a private or independent assessment. If you choose this route, you should check the provider follows national guidelines; you can also check they are registered with an appropriate professional body such as the Health Care Professional Council (HCPC). You can find links to independent practices in our Autism Services Directory. 

Many practices providing independent assessments (outside the NHS) are commercial, but not-for-profit assessment services are available in some areas, for example, those provided by community interest companies and charities, like the National Autistic Society's Lorna Wing Centre. 

Private diagnosis is usually funded by you and is not usually available through the NHS. In a small number of cases, the NHS may cover the costs of a private or independent diagnosis as an Individual Funding Request (IFR). 

Diagnosis outside the NHS can be expensive, but some people choose this route because waiting times are usually much shorter. However, some people may experience difficulties with having their non-NHS diagnosis accepted by local authority and NHS health services; before deciding to go ahead with a non-NHS diagnosis, it is a good idea to check whether this will be accepted in your area.
 

Will my local NHS or local authority services recognise private autism assessments?

You may also be interested in our video

Do I need to tell the NHS if I get a private autism diagnosis?

Barriers to being referred for a diagnosis

Many people delay contacting their GP to raise the possibility of autism; some of the reasons they give include: 

  • fear of being dismissed or not believed by the GP
  • noticing signs but being unsure of what they mean
  • concerns about not receiving an autism diagnosis after an assessment
  • general anxiety about making and attending appointments
  • feelings unable to communicate the signs they notice in themselves or their child
  • fear of judgement from others if they receive a diagnosis
  • the complexity of the healthcare system
  • being uncertain of the value of having a formal diagnosis
  • mistrust of health care professionals
  • the cost of travelling to the appointment
  • the cost if they decide they have to get a private assessment.

Some people seeking a referral for an autism diagnosis from a GP or medical professional have positive experiences and describe their GP as being ‘kind’ or ‘sympathetic’. However, for others, the experience may not be so positive and they may struggle to get a referral.

Autistic people and families who had a negative experience have said they believe this was due to: 

  • a lack of autism awareness among professionals, including relying on stereotypes and demonstrating a lack of awareness about the diversity of the autism spectrum
  • prejudice from professionals, for example due to the persons’ ethnicity, immigration status or past support from services such as social work
  • too much focus on behaviour and not the reasons behind that behaviour
  • focus is placed on parenting style rather than signs that the person may be autistic. 

It is common for autistic adults to have accessed mental health support before their diagnosis, often not realising they may be autistic. Some find that the therapy or medication they are given didn’t improve their situation and so they considered other reasons for the difficulties they were having, which led to them questioning whether they may be autistic. 

Some autistic people mask (hide or suppress) their autistic characteristics, consciously or unconsciously, in order to blend in and be more accepted in society. Masking can make it harder for them to realise they may be autistic and for health care professionals to identify them as autistic.  

Some parents have reported that the diagnostic process can feel like a 'fight' because doctors, teachers or other professionals didn't recognise their child was autistic, instead suggesting they were 'misbehaving’ or that the parents needed support themselves. Others reported being referred for parenting classes implying they were responsible for the differences in their child’s behaviour compared to other children. 

Despite the possible barriers to seeking an assessment, most people who receive a diagnosis are pleased they went through the process. You can find out more about this on our page, How will I feel after receiving my autism diagnosis. Family members can also read our page on Emotional support for family members after a diagnosis.

 

Can I get a second opinion about a referral or make a complaint?

A GP or health care professional may disagree that you or your child shows signs of being autistic and may not support you by making a referral for an autism assessment. If your doctor is dismissive of the evidence you share or does not offer you a referral, you can ask for a second opinion from a different doctor. Another option is to seek a private assessment that is independent from the NHS. 

If you have concerns about how your GP or NHS health care professional has treated you or your child, you can complain. Further information on how to make a complaint in relation to your NHS treatment can be found in the ’Health services’ section of our page What can I do if formal support is not offered or is not enough.

If you have sought a private assessment and have any concerns about how it was conducted, you should raise your concerns directly with the provider in the first instance. If you are unhappy with their response, you may be able to complain to the Independent Sector Complaints Adjudication Service (ISCAS). They have a Complaints Code of Practice, which includes an independent adjudication service (a service to help sort out disputes) as the final stage of the complaint process. You can find out whether the organisation you have a complaint about is a subscriber and get their complaint form on the ISCAS website.

Links, resources and article sources

Related advice and support

Signs that a child or adult may be autistic

Read more

Deciding whether to seek an autism assessment

Read more

How to bring up that you think someone may be autistic

Read more

Related videos
 

Dr Sarah Lister Brook. Clinical Director, National Autistic Society

Expert Q&A with Dr Sarah Lister Brook

Our Clinical Director answers common questions about autism assessment and diagnosis in this YouTube playlist.

View on YouTube

My diagnosis story: Finty

Our Young Ambassador shares her experience of autism assessment and diagnosis.

Watch the video

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