Do you think your child may have autism? Are you thinking about starting the diagnosis process for your child? This can be a stressful and worrying time, and you may be wondering if getting a diagnosis is worth it.
Whether you pursue an official diagnosis or not is your personal choice, but often a diagnosis can bring a sense of relief and help both you and your child’s teachers / care providers to understand your child’s needs better. An official diagnosis also opens up doors to specialist support throughout your child’s life that may not be available to them otherwise. It can also help your child to understand their differences and improve their confidence and self esteem as they get older.
Considering a private assessment
Most children are assessed for autism through the NHS. Currently, children in Bristol and South Gloucestershire are referred to the Autism Hub in South Bristol, and the waiting times from referral to assessment are around 8-10 months. If you can afford it, private assessment from a specialist health care professional is an option, and may reduce the waiting time. Prices vary widely, but you should expect to pay anywhere between £1000-£3500 for a full assessment and report.
There are many practitioners and organisations, both nationally and locally, who offer private autism assessments. We strongly advise you to research who to choose for a private assessment thoroughly before doing so. Please be aware that some local authorities may not accept the results of any private diagnosis, even if they meet NICE guidelines and are qualified; they might insist on an NHS diagnosis as well.
There is no legal basis for the NHS or your Local Authority to reject a private diagnosis. Should this happen to you, you would be within your rights to make an official complaint using the appropriate complaints procedure. The National Autistic Society recommends that you stay on or get on the waiting list for an NHS assessment even if you also decide to go privately. It’s also crucial to note that just because you are paying for a private assessment, there is no guarantee of a diagnosis.
Furthermore, if you are pursuing a diagnosis for Pathological Demand Avoidance (PDA), it is important to note that this is not recognised by the NHS in many parts of the UK.
Choosing a private practitioner
Your local NHS authority and LEA (Local Education Authority) will need to accept the private diagnosis if your child is to be able to access the additional help and support a diagnosis can bring. They are likely to turn down the diagnosis if the practitioner is not fully qualified to hold assessments for autism. It is also very important to check that the assessment is made in line with NICE (National Institute for Health and Care Excellence) guidelines, such as the diagnosis being made by a multidisciplinary team. Local authorities are likely to refuse to acknowledge a private diagnosis if it does not meet the NICE criteria.
We also advise you to remember that not all organisations offering private assessments are equal. Costs of private assessments and wait times, as well as what is actually included, can vary widely from organisation to organisation, so it’s a good idea to phone around several places first before deciding who to use. You should ask about costs, waiting times, what this pays for and whether any follow-up service is offered, as well as checking for qualifications and whether their assessments meet NICE guidelines, as detailed above.
Some centres specialise in giving particular types of diagnoses or helping with specific problems. For example, the Elizabeth Newson Centre in Nottingham is well known nationally for its expertise in diagnosing PDA in children.
What to expect, how long you may have to wait for and how to prepare
Dr Stella Christofides, a Bristol-based clinical psychologist, offers private assessments for children in line with NICE guidelines. She told us she would, ‘have an initial conversation with a parent or carer over the phone to discuss whether a formal assessment would be helpful within a week… and then usually between two to three month wait to start the formal assessment. Once the assessment meetings are complete, I write up the assessment report within two weeks’.
Dr Christofides also advises that, ‘parents and carers can prepare by gathering together any relevant paperwork such as school reports, medical letters and records of the child’s early development. They may also wish to think through in advance about the child’s early developmental milestones, especially regarding learning to speak as well as sleep, feeding and toileting’.
A wait of a few weeks or months can be common if paying privately, depending on current demand, but if the reason you are considering a private assessment is to obtain a diagnosis of PDA you may have a longer wait; the Elizabeth Newson Centre waiting list is currently a year long.
Dr Simon Bird is a Clinical Psychologist based at Formulate Psychology in Bristol and explains a bit more about the formal assessment and examples of extra support they may identify that your child could benefit from:
‘(Assessment) is typically composed of the following:
- a parental interview using the DISCO model;
- an Autism Diagnostic Observation Schedule (ADOS-2) with the child, young person or adult; and
- conversations with third parties where possible (e.g. schools, workplaces or relatives).’
He adds that, ‘occasionally, there are issues that we need to address that expand the format of the assessment. For example, with younger children we may feel that a speech and language therapy assessment is required. Sometimes, we undertake cognitive assessments if learning difficulties are also a potential factor. I have also met with families in the past to gain a more detailed, attachment-focused social history if a child has experienced trauma or other forms of childhood distress that may have contributed to their presentation’.
Options for private assessment
Below are some private practitioners and organisations who currently offer autism assessment for children both locally and nationally. This is not an exhaustive list, and is based on personal recommendations we have come across over the years supporting parents and carers. Inclusion in this list does not constitute as a recommendation from Bristol Autism Support or a guarantee that the practitioner or organisation will meet your needs or offer a diagnosis that is currently accepted by your local authorities. All information correct at the time this article was first published (November 2020).
Dr Tanya Rawlinson (not offering assessments until 2022 due to maternity leave)
Dr Jo Jones (offers PDA assessments from Leamington Spa)
Elizabeth Newson Centre (PDA assessment specialists in Nottingham)