Please note: Daisy Chain cannot provide diagnosis for any of the neurodiversities mentioned in our criteria. The below is intended as advice for next steps, and all information on the links should be read thoroughly to make your own informed decision.
If you’re a parent/carer and would like to explore diagnosis for your child, you can:
- For under 5’s, parents/carers will need to request that their child be referred to a Community Paediatrician via their GP or their Health Visitor.
- For over 5’s, any professional who knows your child can submit a neurodevelopmental form to Neuro-developmental Triage panel in your locality. This includes schools, health visitors and GPs. They should call the professional helpline to discuss this with the team in the first instance, prior to submitting.
- Contact clubs@daisychainproject.co.uk to find out what activities and support you can access, even without diagnosis. Depending on location you can also access different forms of family support – visit the Get Support > Parents & Carers tab on our website.
If you’re an adult and would like to refer yourself for diagnosis, you can:
- Contact your GP and make an appointment OR there are options for private diagnosis routes. Daisy Chain cannot make recommendations on this and advise you to do your own research.
- Meet your GP and communicate the reasons why you think you may be neurodivergent. You can be referred to the NHS waiting list, or refer yourself via Right to Choose. For both of these referral routes your GP has to agree and do their part of the referral process. You can choose the Right to Choose route for autism and ADHD – https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/
The waiting lists can be long, whichever method you’re referred via. You can access many of our adult services and support without a diagnosis. Contact clubs@daisychainproject.co.uk to find out what activities and support might be suitable for you.
You can join our Neurodiversity Link Facebook Group: https://www.facebook.com/groups/dcneurodiversitylink
National Autistic Society has a great page on its website giving advice and information around adult diagnosis. Click here to read more.
Undergoing the autism diagnostic process can be a daunting and difficult time, so we’ve put together a list of FAQs below to give you an idea of what to expect.
If you suspect you or your child is autistic, making an appointment to see your GP or health visitor is a good place to start. Make some notes and take them along to your appointment with you. A diary of behaviours and characteristics that you have observed/you relate to would be useful.
Children
A diagnosis can take place for a child when they’re quite young (in some cases, as early as the age of two) but not everyone is diagnosed early in life. It’s quite common for a child to not get their diagnosis until they are older, or even an adult, particularly if they don’t have accompanying learning difficulties.
Adults
Many adults are diagnosed later in life, particularly women. You can find out more about neurodivergence in women here. Learning about yourself and self-diagnosing is often the first step to reaching out for an official diagnosis.
A diagnosis is the formal identification of autism, usually by a health professional such as a paediatrician or psychiatrist. Having a diagnosis not only helps autistic people and their families to understand why they may experience certain difficulties, but also enables them to access some services and support.
Due to recent and upcoming changes to the main diagnostic manuals, “autism spectrum disorder” (ASD) is now the most commonly given diagnostic term. You can read a useful resource from Embrace Autism which breaks down the diagnostic criteria. Some autistic people also have learning disabilities, mental health issues or other co-occurring diagnosis.
Children
The process of getting an autism diagnosis can be lengthy. Timescales vary greatly depending on each child.
Once you have visited your GP, you may then be referred for a formal assessment. Your child should have a multi-agency diagnostic assessment – that is, an assessment by a team of professionals. The team might include a speech and language therapist, a paediatrician and a specialist psychologist. A detailed developmental history will be taken, which involves gathering information from parents or carers about their child, from birth upwards. If your child is of school age, a CAMHS clinician will carry out assessments of them within the school environment. This will include observations of both structured and unstructured periods, e.g. lessons and break time. Your child’s teacher will also be involved in the information sharing process to provide further insight. An ADOS assessment (Autism Diagnostic Observation Schedule) will also be carried out – this consists of activities that allow behaviours to be observed.
Once all the assessments have been completed, a meeting will be held to discuss the outcome and a diagnosis may be given, or recommendations to support the child going forward if there is not enough evidence gathered to support a diagnosis.
Adults
Assessment experience varies depending on who completes the assessment, but generally you can expect:
- To be asking to fill in a questionnaire about yourself and any challenges you face
- As part of this questionnaire, someone who knew you as a child to find out about your childhood may be asked to provide some information
- As part of this questionnaire, someone who knows you really well such as a spouse may be asked to provide some information
- That professionals may request to read any reports from the GP about other health problems you may have
Find out more via the NHS website.