Seeking a diagnosis for autism
Autism is a lifelong disorder that has a great impact on the child or young person and their family or carers. Children can be diagnosed as autistic when they’re quite young but getting a diagnosis is not always easy and in some cases the diagnosis may come later in life.
It must be recognised that there may be other explanations for concerns about development or behaviour when considering the possibility of autism.
• signs and symptoms should be seen in the context of the child’s or young person’s overall development
• signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment
• cultural variation should be considered, but it should not be assumed that language delay is accounted for because English is not the family’s first language or by early hearing difficulties
• autism may be missed in children or young people with a learning (intellectual) disability
• autism may be missed in children or young people who are verbally able
• autism may be under-diagnosed in girls
Should you seek a diagnosis?
Concerns that your child has autism may be very daunting and parents may delay pursuing this. However, getting a diagnosis can give you a better understanding of their needs. Once you know that there is a reason for the behaviour it can help you better plan to meet the needs of your child, both at home and school. If you are unsure about pursuing a diagnosis, it can still be a good idea to ask for a referral as you may have a long time to wait for an appointment. This will mean that you are not delaying the process while allowing yourself time to give it more thought.
The BMA have argued that what happens in the earliest stages of life shapes what happens later on, and the time it takes to provide this support is key. They note that delays and long waiting times for diagnosis, followed by inadequate or ineffective support, can be significant barriers to a child or young person’s development. The FOI data show that in England, less than 10% of children had their diagnosis started within the three-month target.
Autism.org.uk explains the process for getting a child referred for an autism diagnosis:
- Speak to your GP or health visitor – Make an appointment with your GP (or health visitor for young children). Take along a list of behaviours and characteristics that make you think your child might be autistic. Perhaps keep a behaviour diary leading up to any appointment.
- Screening – If your child is pre-school age, your health visitor or GP may carry out a ‘screening interview’ called M-CHAT (Modified Checklist for Autism in Toddlers). This will not give you a diagnosis, but it is a way of indicating whether your child may be autistic.
- If you have a school-age child, it can be useful to make an appointment with the school’s Special Educational Needs Coordinator (SENCO) to discuss your concerns. Teaching staff may have also identified similar behaviours and characteristics that you can mention to your GP and/or in your child’s diagnostic assessment.
NICE guidelines state that an assessment should start within three months and be done by a team of people who are specialists in autism. Private diagnosis is an option, if you can pay for one, and can reduce the waiting time. The costs of private assessments can vary. However, some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, it is suggested that you stay on the waiting list for an NHS assessment even if you also decide to go privately.
There are tools, such as online screening tests or smartphone apps promoted to use for a diagnosis but be wary of these. There are many factors affecting a child’s development and many other sensory, physical and mental health conditions that will require specialist investigation.
Different diagnosticians use different methods to diagnose autism, but there are NICE clinical guidelines that should be followed. An assessment usually includes:
- reports from all settings (e.g. school, nursery), details of the child’s or young person’s experiences of home life, education and social care
- a developmental history, focusing on developmental and behavioural features
- a medical history, including prenatal, perinatal and family history, past and current health conditions
- observations in more than one setting
- a physical examination
- assessment (through interaction with and observation of the child or young person) of social and communication skills and behaviours
An autism diagnostic report
Understanding your child’s unique individual profile of needs is very important. The final report should give a clear diagnosis. Be aware that reports are very deficit-based, detailing what the child cannot do, which can be upsetting reading. However, this helps to identify and argue the case for the best form of support. A copy is sent to your GP and to other relevant agencies, such as the school.
You may be told that your child is not on the autism spectrum, or your child may be given a diagnosis that you don’t agree with. You can seek a second opinion, but remember that it may reach the same conclusion as your first.
If the report concludes that there is no autism, it should explain how they reached this decision and suggest any other services that might help and that you could be referred to for support.
If you are concerned that a loved one maybe on the autism spectrum check out our article ‘Is your child on the autism spectrum’ may be useful.
Your Employee Wellbeing has a team of experts who help support employees with the challenges they face in every day life. Our childhood resource associate, Karen Beresford, wrote this article.
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