What is autism?
‘If you’re autistic, your brain functions in a different way compared to if you are non-autistic. This can mean you have a different sensory experience; you process information differently and have different social and communication preferences’ – Ambitious about Autism.
‘Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people. It's something you're born with. Signs of autism might be noticed when you're very young, or not until you're older. If you're autistic, you're autistic your whole life. Autism is not a medical condition with treatments or a "cure".
‘Being autistic does not have to stop you having a good life. Like everyone, autistic people have things they're good at as well as things they struggle with. Being autistic does not mean you can never make friends, have relationships or get a job. But you might need extra help with these things’
‘Autism is a spectrum. This means everybody with autism is different. Some autistic people need little or no support. Others may need help from a parent or carer every day’
– NHS What is Autism?
Signs that a child or adult may be autistic
Autism presents differently in different people. The signs that people notice in children and adults are usually consistent with the core characteristics of autism, but this isn’t always obvious. The Autism.org.uk website contains examples of common signs seen in autistic children and adults.
Understanding different behaviours
Children and young people with autism may display behaviours. This section provides insights into the underlying causes of these behaviours and offers guidance on how to effectively support them.
- Read more about behaviour on the Autism.org.uk website
- Read more about behaviour on the Ambitious about Autism website.
Referrals and initial assessment
Your child will need to be referred for an initial appointment.
- For children aged up to 11 years: A referral is made to Community Paediatrics Team
- For children aged 11 years and over: A referral should be made to the Child and Young People’s Mental Health Team. This service is provided by North East London Foundation Trust but within Kent.
- In east Kent all children from eight years are seen by the Child and Young People’s Mental Health Team.
Read what happens at the first appointment.
After an assessment with a community paediatrician, your child may be referred for an autism spectrum disorder (ASD) diagnostic assessment.
The diagnostic assessment
The diagnostic assessment is a specialist assessment by team, which includes a paediatrician and a speech and language therapist (SLT). Your child may be seen jointly by a paediatrician and SLT, or by the speech and language therapist first and then the paediatrician who will feedback the assessment findings.
The assessment involves one member of the team, usually the paediatrician, talking with you and finding out about:
- your concerns and those of your child, if appropriate
- how your child has been getting on at home, in nursery or school, or in care
- your child’s past and present health, and that of the family
- your child’s behaviour and development.
The other member of the team, usually the speech and language therapist, will talk with and observe your child. They will also carry out other specific assessments that will help to provide more information, such as an assessment of how your child uses language and/or how they interact and communication with others.
Types of assessment
To assess for autism, the clinician will use either autism diagnostic observation schedule (ADOS) or brief observation of symptoms of autism (BOSA). Both assessments are conducted in a similar way, but use different tools to complete evaluation. For example, BOSA may use parent involvement and ADOS will not.
Autism diagnostic observation schedule
During the pandemic, we could not use ADOS, as it is not possible with a face mask on.
Brief Observation of Symptoms of Autism (BOSA)
During a brief observation of symptoms of autism (BOSA) assessment a parent engages with their child, through a set format of games and conversation, while being observed by a clinician.
To be effective, the clinician will give parents clear instructions and will coach them through if needed. It usually takes 12 to 14 minutes and the clinician can observe any autism symptoms while in the room or in the next room, through an observation window. The assessment is filmed, with consent and assessments are well received by parents, carers and children.
Like the ADOS, the BOSA is only part of multi-disciplinary diagnostic assessment which also includes a detailed case history and wider assessment by the community paediatrician.
Watch these videos for more information for young people and parents/carers. Originally created by Cambridge University Hospitals NHS Foundation Trust.
Once completed, all the information from the assessment, the information you have given them and any information from your child’s school/preschool or other professionals who work with your child to help the team come to a decision about whether your child may have autism.
Diagnosis
If your child is diagnosed with autism
You will be told at the assessment if your child meets the criteria for a diagnosis of autism. The team will explain more about autism and how it might affect your child.
You will also be given information about the support you and your child can get in your local area. For example, you may be given contact details for support groups that can give you the opportunity to meet other families with experience of autism and advice about other services that are available.
They team will share information from the assessment with your child’s GP, and if you agree, with other professions, such as your child’s school or other professionals if appropriate, to help them offer you the support you need.
A member of the team will talk to you (and your child, if appropriate) about all of this, soon after the assessment, and give you a written report explaining the findings of the assessment.
If the diagnosis is uncertain
Sometimes there can be uncertainties when diagnosing autism and it may not be possible to be clear about what is the diagnosis.
If this happens, the team will talk to you about will happen next. This may be that they will see your child again after an agreed period of time or they may refer your child to another team that can help.
If your child does not have autism
A member of the team will explain why your child doesn’t have autism and may offer to refer you to other specialists (for example, child health services or child and adolescent mental health services, also known as CAMHS), if they think they may be able to help.
How long does it take to receive assessment?
The demand for this clinical assessment is very high.
Like the rest of the country, waiting times for this service have increased due to the Covid-19 pandemic. In particular, the wait for an autism spectrum disorder assessment is now between 36 to 42 months for those children who need a full assessment.
While the service remained operational, waits have increased because:
- we had to restrict face-to-face clinics to keep children and families safe – while appointments were held by video or telephone, for children who need diagnostic assessment this has to be done face-to-face. Therefore, most children who were seen virtually, still need a second appointment in person.
- autism diagnosis needs a face-to-face assessment – our clinicians could not complete the face-to-face autism diagnostic observation schedule (ADOS) assessment, as it wasn’t possible to use this and wear a face mask or maintain a social distance.
- referrals rates have increased during the past two years – there have been periods when referrals rates have been higher than pre-pandemic levels. Specifically, the service has seen an increase in under-fives.
- a shortage of speech and language therapists – nationally there is a shortage of speech and language therapists working in the NHS and our therapists are a key part of the team that is required to complete the assessments, which help to support a diagnosis.
- reduced medical capacity – diagnostic assessments must be completed by a medical practitioner, we are actively recruiting doctors to support our waiting lists.
We know this is a long time and the reasons for the increase in waiting lists are no consolation to the children and their families.
We apologise for any distress this causes and we are focused on doing everything we can to see children faster. We have bolstered teams with support, providing 30 extra assessments a month from September 2022, have recruited a specialist teacher and educational psychologists, are piloting innovations and providing extra support to signpost children and their families.
It is important to know that you can access support while you are waiting for an appointment and that a diagnosis is not required to access this support.
What can you do?
Please keep your appointment and let us know if you can’t make it. In the past year, 748 children missed their initial appointment – this is 10 per cent of our caseload. If appointments are attended this can help us to reduce our waiting times and help all children who need us faster.