Autism is a lifelong neurodevelopmental disorder which is often missed in early childhood. To get diagnosed with autism, you will need to be assessed by a specialist autism team. Autism cannot usually be diagnosed by primary care providers such as your general practitioner.
Here is how to get diagnosed with autism, and the steps you need to take.
Research the signs or characteristics of autism
Pursuing an autism diagnosis with the NHS can be a lengthy process and pursuing a private autism assessment can be costly. It is therefore imperative that you are confident that you identify with the characteristics of autism as the first step of your journey.
An autism diagnosis is only made when an individual meets the diagnostic criteria set out in standardised diagnostic manuals (DSM 5 or ICD 11). Many people can identify with certain aspects or characteristics of autism in isolation, but having one or two characteristics associated with autism does not mean that you are autistic. In order to meet the criteria needed for an autism diagnosis, a pattern of differences which includes difficulties in social interaction and communication alongside restricted, repetitive interests and behaviours must be present.
Autism is also a lifelong condition, and differences must have been present from an early age in one form or another to meet the diagnostic criteria for autism. It is not unusual for someone to only become aware that they may possibly be autistic in adulthood, but it is not usual for autistic differences to only surface in adulthood.
You can find the diagnostic criteria and examples of behaviours, strengths and difficulties that align with the diagnostic criteria here.
When researching the characteristics of autism, consider whether you can identify with a pattern of differences rather than a difference in only one of the areas. When doing so, make a note of your own experiences, strengths and difficulties that relate to autism; written notes may come in useful if you proceed to request an assessment later on.
Complete an autism screening questionnaire
Screening questionnaires are standardised tools that help identify the presence of a range of autism characteristics and subsequently determine whether enough characteristics are being experienced to suggest an autism assessment is warranted.
Screening questionnaires, such as the 10-item Autism Spectrum Quotient, usually involve you responding to a range of statements identifying whether you relate to them or not, and how strongly they impact you.
Clinically evaluated screening questionnaires are reliable tools that can help you to decide whether you should pursue an autism assessment or not. Health professionals also use the tools to decide whether to refer someone for an autism assessment or not. Keeping a note of your score on a particular screening tool can also help you when requesting a referral for an autism assessment from your GP.
Speak to your GP
Most NHS adult autism diagnostic pathways require a referral from your GP. You cannot usually directly refer yourself for an NHS autism assessment (although you can refer yourself for a private autism assessment).
If you wish to be referred for a NHS autism assessment, you will need to discuss your experiences with your GP and request that they refer you to your local NHS autism diagnostic service.
If you made notes when researching the characteristics of autism, it will be helpful for you to share these with your GP along with the outcome of any screening questionnaires you have completed as part of the discussion. Not all GP’s have the same level of experience in identifying the traits of autism, so any information you can share from your own research will be helpful.
Your GP may want to take a ‘watch and wait’ approach if they feel that there is a better explanation for the difficulties that you are experiencing. If this is the case, and your difficulties remain, you will need to revisit your GP at a later date and emphasise how the pattern of autistic symptoms are impacting you in daily life.
Many adults find accessing their GP practice is a barrier in itself, and it may be worth asking for a friend or family member to help you to secure an appointment and accompany you to that appointment.
Understand your local pathway and expected waiting time
Your GP may have explained your local assessment process and pathway to you during your appointment, and the expected waiting time.
If you were not provided with this information, you can usually find information about your local autism service via your NHS website or autism information service. If your local service does not publish average waiting times on its website, you can call the service and ask about your current position on the waiting list and the estimated wait time before you are seen. NHS waiting times for autism assessments are growing month on month, and the waiting time in many areas stretches to more than a year. Being aware of the time you are expected to wait will allow you to manage your expectations.
Consider a private autism assessment
If you are faced with a particularly long waiting time for an autism assessment with your local NHS service and do not want to wait, you may wish to consider a private autism assessment.
Waiting times for a private autism assessment are significantly lower than the NHS, and you can expect to be seen within around two weeks when commissioning a private autism assessment.
This is something that you may also want to consider if you are unable to obtain a referral for an NHS assessment. Adults can self-refer for a private autism assessment; a GP referral is not necessary.
When conducted correctly, a private autism assessment is as valid as an NHS assessment, and often a private assessment will give you a more detailed report and recommendations than you would typically receive within the NHS, so it’s definitely something worth considering.
The assessment process
Whether using the NHS or a private service, the next step in your autism assessment journey will be to complete the autism assessment itself.
During the process the assessment team will need to gather information about your current experiences and experiences in childhood. Depending on your situation they may gather childhood information by meeting with someone who knew you as a child.
The team will also need to observe your communication and interaction. They will usually use a standardised tool such as the ADOS 2 to gather this information.
The team may also ask your partner or a close friend to be part of the assessment process if this is appropriate.
When all the information that the team need has been gathered, they will meet to discuss whether or not they feel that your experiences, strengths and differences meet the diagnostic criteria for autism spectrum disorder.
Understand your diagnosis and profile
After your assessment is complete, you will be provided with the outcome. The assessment team will let you know whether you meet the criteria for a diagnosis of autism or not. They should also alert you if they feel that your presentation indicates the presence of another condition, such as ADHD, which will usually require further assessment.
At this point, you will be provided with a report which will provide an overview of information gathered as part of the diagnostic assessment. Your diagnostic report will also contain recommendations of resources that may be of use to you and links to organisations that can offer support and advice following a diagnosis. You should be offered an appointment to discuss your assessment and the outcome with one of the clinical team.
Summary
An autism diagnosis can only be issued by a specialist assessment team. The waiting times and assessment process can be long, and you should be prepared for this. A private autism assessment is an alternative to a NHS assessment. Private autism assessments do not require a GP referral and have much shorter wait times,
