New recommendations have been published aimed at improving the diagnosis and treatment of children and young people with autism. NICE, the National Institute for Clinical Excellence says that local autism teams should be set up across the country.
Even though it's estimated that at least one in a hundred children are diagnosed with autistic spectrum disorder (ASD), NICE says levels of understanding among healthcare professionals varies greatly in the UK. It can be difficult to diagnose children with ASD because of the wide range of signs and symptoms. Up to 70% of those with ASD also have other conditions such as Attention Deficit and Obsessive Compulsive Disorder or an intellectual deficit.
Guidance published today by NICE recommends that local multidisciplinary autism teams are set up to support healthcare professionals and enable them to work together with schools, social care, the voluntary sector and other key services which can offer useful insight into this condition. This is to ensure that children and teenagers with possible ASD, as well as their parents or carers, receive the appropriate care and support they need.
- Autism teams should lead on the referral and diagnosis of individuals with possible ASD, and should include a paediatrician, a child and adolescent psychiatrist, a speech and language therapist, a clinical or educational psychologist, and an occupational therapist.
- The autism teams should undertake diagnostic assessments where appropriate, and advise healthcare professionals about referrals.
- Every autism diagnostic assessment should include an assessment of social and communication skills and behaviours through interaction with and observation of the child or young person, and consideration of any coexisting conditions.
- A profile of the child's or young person's strengths, skills, impairments and needs should be developed during their assessment. With consent, this profile can be shared with those involved in the child's education to help ensure the assessment will contribute to the child or young person's individual education plan and needs-based management plan.
Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE said: "A correct diagnosis of autism can bring a profound sense of relief to some children and young people from what can be an intense feeling of isolation from the rest of the world.
“It can also help them and their families or carers to get support from education, health services and voluntary organisations and make contact with others with similar experiences.”
This is the first of three NICE guidelines to focus on this condition. NICE will be publishing further guidance on the management of autism in children and young people, and on autism in adults. To help put this guidance into practice, NICE has produced a range of support tools, including signs and symptoms tables for children of preschool age, primary school age and secondary school age.
The National Autistic Society has welcomed the guidance saying these "vital" recommendations should bring about a far more consistent approach to referral and diagnosis, and mean more children getting quicker access to necessary support services.
Mark Lever, NAS Chief Executive, said: “We hear all too often from parents who have been pushed from pillar to post trying to get a diagnosis for their child, and even once their child is diagnosed a further battle to get the right post-diagnosis support. In a recent NAS survey, 68% of parents we spoke to said it had not been easy to get support for their child. Lack of appropriate support can have an extremely detrimental affect on the family as a whole, and lead to more costly services and support being required further down the line.
“The NICE guidelines offer a clear cut process for families in terms of diagnosis and early support and we urge local authorities to implement these recommendations as soon as possible to prevent more children and their families struggling unnecessarily. It is important to point out however, that diagnosis is just the beginning of the journey for people with autism, and in addition to the NICE guidelines we further welcome the proposed NICE Quality Standards, which define best practice across health and social care, giving both children and adults with autism vital information to get the
support and services they need. With the right support at the right time, people with autism can lead happy and fulfilling lives.”
You can read the guidance in full at this link: http://www.nice.org.uk/CG128
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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