Autism diagnostics

I think I might be autistic, how do I go about getting an assessment?

Preparation to help with getting a referral.

When you are seeking a referral for an autism assessment be clear about why you think you are autistic and how you think receiving a diagnosis will help you.

When you receive an assessment, we will ask if you have any family or friends that can support with your assessment, talk to them to see if they are happy to take part in your assessment too.

The National Institute for Health Research have developed a quick referral guide for adults with suspected autism who do not have a learning disability (called a AQ-10). Completing this can support your request for an autism assessment and can be submitted with your referral

Find the AQ-10 referral guide document on the National Institute for Health Research website by using this link (opens in new window).

Where do I go to get a referral for an autism assessment.

You can request a referral from you GP or any clinical professional currently working with you within LPFT.

When asking for a referral they should consider if you have:

• One or more of the following:
  • Persistent difficulties in social interaction
  • Persistent difficulties in social communication
  • Stereotypic behaviours (rigid and repetitive, resistance to change or restricted interests, and
     
• One or more of the following:
  • Problems in obtaining or sustaining employment or education.
  • Difficulties in initiating or sustaining social relationships.
  • Previous or current contact with mental health or learning disability services.
  • A history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder (ADHD)) or a mental health disorder.

The above considerations are taken from the National Institute for Health and Care Excellence (NICE) guidance on Autism spectrum disorder in adults. You can read more in their full guidance on their website by using this link. (opens in new window)

I have been referred for an autism assessment - what happens next?

Once the service has received your referral we will collect some initial screening information. This includes:

1. If you are 18 years or older.
2. That you are registered with a GP in Lincolnshire.
3. That the referrer is seeking an autism assessment.

The service will then complete the following steps:

Step 1

We will send you a triage form to complete and return to us within six weeks. However, if you need more time please let us know via email or telephone.

Step 2

Once we have received your triage paperwork it will be reviewed by one of our team to decide whether an assessment is appropriate or not. You will receive a letter outlining the outcome of this screening and more information on next steps.

Step 3

If it is agreed that an autism assessment is required you will be added to our waiting list. The wait time for assessment is never static and we will let you know in your acceptance letter how long this might be.

I am on the waiting list for an assessment – what happens next and what support is there?

Whilst you wait there is some further reading that might support you, or in Lincolnshire we have a Virtual Autism Hub that can signpost you to groups and activities that might help in the community.

Below are details of some resources that might support while you are waiting:

• Read more about the Virtual Autism Hub and how to access support on our website by using this link.
• The National Autistic Society has lots of great resources to read, as well as an Autism Helpline that you can call on 0808 800 4104. Visit their website at www.autism.org.uk or by using this link (opens in new window)

What if my situation gets worse while I'm waiting?

While you are waiting, if at anytime your circumstances change and you are struggling, or you are at risk of not being able to access or sustain employment, education, or health services without having received your assessment, please make contact with the team either via email or telephone and we can review the changes you are experiencing.

I am starting university soon and need support

If you have been accepted onto our waiting list and your estimated wait time will mean that you will be at university by the time you are offered your assessment, please contact the team, and let us know your start date. We cannot guarantee that we will be able to support an assessment sooner but we will review your information and take this into consideration.

What happens when I reach the top of the waiting list?

You will be allocated to one of the team’s assessors, and they will make contact with you to book your assessment.

When arranging your assessment we will consider any adjustments that you may need, including location of the assessment, whether a virtual assessment may be appropriate, and duration of appointments.

In preparation for your assessment, you will be asked if you have a family member or friend that could tell us about your early childhood and development. We understand that this is not always possible and your assessment can still continue without their input.

If you would like support during your assessment, we are happy for you to bring a friend or partner, but please let us know so that we can arrange a space large enough for everyone to attend.

What will my assessment involve?

Step 4

A diagnostic assessment is usually undertaken over an average of three appointments. However, please do not be concerned if your assessment is completed in one appointment. You have shared a lot of information in your original triage paperwork that we will read and consider as part of the assessment.

During the appointments we use only validated diagnostic tools, as directed by the National Institute of Health and Care Excellence (NICE). You can read more about these on the NICE website by using this link. (opens in new window)

These diagnostic tools include:

• Autism Diagnostic Interview - revised (ADI-r)
• Diagnostic Interview for Social and Communication Disorders (DISCO)
• Autism Diagnostic Observation Schedule Assessments (ADOS)

Step 5

Your assessor will review your assessment and write a draft report that will be shared with you.

Once you receive this we ask that you review this draft report within six weeks. If you require more time, please let the team know either by email or telephone. You can request changes and amendments to your report and there are several ways that you can share your feedback and comments:

• Face-to-face appointment or feedback session with your assessor.
• Telephone contact with your assessor.
• Email the team inbox and this will be forwarded to your assessor.

Step 6

If you have requested alterations to your report, once these are completed, your report will be sent to you to approve. Once you have agreed the contents of your report your assessor will finalise and share this with you and your GP to update your medical records.

If we have not heard from you after six weeks, your assessor will finalise your report and send this to you and your GP to update your medical records.

Step 7

If you have received a diagnosis following your assessment, we will discuss what further support can be offered to you through our post diagnostic pathway. If you do not feel that you want any support from the post diagnostic pathway at the moment, you can self refer to the team at a later date.

Download the referral form for the post diagnostic support team by using this link (will download file to local computer).