What is autism?

Autism is also known as:

• Autism spectrum condition (ASC)
• Autism spectrum disorder (ASD)
• High functioning autism
• Asperger’s syndrome.

It is often represented by the rainbow infinity symbol.

It is a neurodevelopmental condition that people are born with.

Some people may not notice differences until later in childhood or adulthood.

Clinicians are aware autism can present in different ways for different people and groups (e.g. in women).

Some people develop ways of masking or compensating for everyday difficulties.

Challenges

Autistic people often share similar challenges across their life, including in education, employment, and social relationships.

For example:

• finding social situations tiring and difficult
• struggling to understand what other people feel, intend or mean
• finding it difficult to deal with changes in their plans or environments
• preferring to follow rules and routines
• becoming absorbed in interests to an extent that can interfere with relationships or activities
• being over (hyper) or under (hypo) sensitive to certain sensory stimuli (e.g. sounds, lighting, smells, textures or bodily sensations)

Autistic people can also experience emotional problems such as anxiety or depression.

Extra support may have been offered from health or social care services or at school.

Stage 1: The referral process

You may decide a diagnostic assessment would be helpful if:

• you are experiencing challenges, thought to be related to autism, which are impacting significantly on your life
• an assessment will help you understand yourself and cope better

You may decide not to be referred for a diagnostic assessment if:

• issues potentially related to autism do not have a big impact on your life
• you are worried a diagnosis might complicate your work (e.g. if working in the armed forces) or relationships

Requesting a referral

To request a referral please speak to your GP or other health professional. They will:

• ask about your personal history, development and current situation to help decide whether a referral to this service is right for you
• ask you to complete a questionnaire about some of your current strengths and difficulties and will fill in a referral form
• ask about your preferred mode of contact on the referral form (e.g. post, email or telephone)
• submit the referral form to us, if they think you may be autistic

Need to know

Please be aware that not everyone referred will be offered an assessment.

Also, not everyone assessed receives a diagnosis of autism.

Sometimes it is not possible to reach a decision or gather sufficient information to meet criteria.

Sometimes there may be another explanation for the issues a person has experienced.

Whether or not a diagnosis of autism is given, helpful recommendations and ideas can still be shared.

Stage 2: Reviewing the referral

Referrals to our service are triaged by clinicians who decide if a full autism diagnostic assessment is appropriate.

If we decide we are not the correct service, we will write to inform your GP and copy the letter to you.

Sometimes we might need more information, or the necessary information was not provided at the time of referral.

You can ask your GP practice to give you a copy of the referral form so that you can check the correct information was provided.

If we decide an assessment is appropriate, you and your GP will receive a letter to confirm this.

Stage 3: The diagnostic assessment

Due to the high demand for autism assessments, you are likely to have to wait in excess of 24 months for an appointment. We do all we can to keep waiting times as short as
possible.

An autism assessment involves finding out about your current difficulties but also about what you were like as a child.

1. Gathering information about your childhood:

• We will ask if you have a parent/carer who can provide detailed information about your early development (particularly around the age of 3-5 years).
• With your permission, this person will be contacted
  separately to answer questions by telephone or via an online appointment. This can take anywhere between 1-3 hours and may take place some time before your appointment.
• If there is no one that can provide this information, please let the service know. It may still be possible to proceed, but it will be harder to be certain about
  whether or not you have autism.
• Other information from your childhood, such as clinic reports and school reports, can provide helpful information. Please send us any relevant information as soon as you can.

2. Attending your autism assessment:

• We will send a letter or telephone you to arrange an appointment at The Whiteleaf Centre in Aylesbury.
• We will talk to you about aspects of your life and ask you to undertake various tasks that are part of a standardised assessment for autism.
• At your assessment, you are likely to meet more than one clinician from our team.
• This part of the assessment lasts between 2-4 hours, but you will be able to take breaks.
• You can bring someone to support you, but they will not be able to join you for all parts of the assessment.

3. Feedback:

• This is usually provided straight after the second part of the assessment.
• However, if the assessor feels that further consideration is needed they will inform you of the next steps.

Stage 4: After the assessment

The team will write to you and your GP with one or more detailed reports of the different parts of the assessment and the outcome.

They may also send copies of the reports to other professionals involved in your care but will discuss this with you first.

If you do not want all the information gathered to be shared with your GP, or others involved in your care, please discuss this with the clinician at the point of assessment.

Your choice

If you are diagnosed with autism, you can choose either:

• our 6 week post-diagnostic small group, or
• our post-diagnostic booklet

You will then be discharged from the service.

Further information and support

Autism Bucks

A local charity providing support groups, information and training.

Website:        www.autismbucks.org

The National Autistic Society

A leading national charity providing guidance, support and advice.

Website:        www.autism.org.uk

Buckinghamshire Mind

Offers general support with mental wellbeing.

Website:        www.bucksmind.org.uk

Click the ‘How can we help?’ tab for information about looking after your mental health.

It will also tell you how to contact Safe Haven if you need urgent help.