I specialise in autism diagnosis and follow-up support as clinical director of Everlief Child Psychology, one of the largest child psychology clinics in the UK. I lead a team who carry out autism assessments at Everlief. Before Everlief I worked for the NHS in a CAMHS team, where I ran a service supporting families whose children had recently been diagnosed with autism. In this article I cover information that will help you if you have noticed possible signs of autism in your child and you are:
- On a waiting list for an autism assessment.
- Considering seeking an autism assessment for your child via the NHS.
- Considering a private autism assessment.
- Unsure if you should seek an autism assessment for your child.
Please note that although much of this information will be relevant internationally, I am writing about the autism assessment process in the UK.
What is an Autism Assessment?
Autism assessments are sometimes called ASD assessments or neurodevelopmental assessments. Neurodevelopmental assessments often assess other neurodevelopmental (brain development) differences as well, such as ADHD. Sometimes, autism assessments form part of a wider assessment looking at developmental disorders, developmental delays or intellectual disability.
An autism assessment is a process of collecting information about a child’s development and functioning. This leads to a decision about whether the child meets the diagnostic criteria for autism. (Autism is often referred to as autism spectrum disorder, ASD, or ASC – autism spectrum condition.)
What Happens During an Autism Assessment?
The process varies greatly. Always check that the service you choose follows NICE Guidelines. NICE is the National Institute for Health and Care Excellence. NICE states that autism assessments should be conducted by more than one health professional. In other words, an autism diagnosis shouldn’t be based upon just one professional’s opinion.
Autism assessments are a mixture of assessment tools, clinical observation and discussion. By assessment tools, I mean standardised and structured observation schedules, interviews or questionnaires which have been supported by research.
Everlief’s Autism Assessments
As an example, here’s a summary of how my clinic Everlief’s autism assessments work and the professionals involved. This is a comprehensive diagnostic evaluation designed to ensure an accurate diagnosis and to consider the “whole child” including the child’s strengths and difficulties.
The first step is the process is for one of our care co-ordinators to have a 15-20 minute chat with you on the phone. This helps us determine whether we should be considering an autism assessment for your child. The care co-ordinator will ask some basic questions about your child’s symptoms, your concerns and the specific signs of autism you may have observed.
From this point we may send you a screening tool, depending on your child’s situation. This may be an autism screening tool such as the Childhood Autism Rating Scale (CARS2), or a questionnaire like the Conners Rating Scale to help us consider whether other conditions like ADHD should also be assessed.
If we consider that an assessment may be merited, we will invite you to attend a one-hour initial assessment meeting. At this point, we ask you to complete a comprehensive pre-assessment form which gives us much more information about your child so that we can be fully informed when we meet them.
Initial Pre-Assessment Meeting With the Family
At this meeting you meet with a clinical psychologist who specialises in autism. The psychologist spends time observing and chatting with you and your child. By the end of the appointment we want to make a joint decision with you as to whether proceeding with the assessment is the best decision.
We are always sensitive to your child’s current understanding. Ideally you will have been fully open with your child prior to attending the appointment and will have explained autism to them. Sometimes the assessment is actually driven by the child who has researched autism and wants to know if they are autistic.
Occasionally, parents haven’t informed their child why they are coming to the appointment or haven’t specifically mentioned the term autism. We will respect this and we try to introduce the idea gently. For example, we may explain to a younger child that they seem to have a very special brain and that we are going to do some tests and puzzles to try to understand their special brain better.
Once we decide to go ahead with the assessment, there are four parts to the process:
DISCO Parent Interview
Parents and psychologist meet for a four-hour semi-structured interview-based assessment called the DISCO – Diagnostic Interview for Social and Communication Disorders. The DISCO was developed in the 1970s at the Lorna Wing Centre for Autism and has been continuously refined ever since. In the DISCO, the psychologist covers your child’s development and current functioning in all areas.
The entire questionnaire takes 3-4 hours to complete and it is extremely thorough. Your responses are scored throughout, mostly 0-2. Zero generally means: “this response suggests that the child’s behaviour or functioning is not typical for their age”. A score of two means “this response suggests typical behaviour or functioning”, and 1 means: “some concern”. The DISCO looks at areas related to symptoms of autism spectrum disorder such as social communication, social interaction, social play and imagination, repetitive behaviors and obsessive interests. However, it also looks at areas of development that may be indirectly related, such as eating, gross motor skills and independence skills.
The DISCO is one of my favourite diagnostic tools because it is so comprehensive, but also because by the end of the process both the psychologist and parents usually feel like they have a really in-depth understanding of their child. Parents regularly report to me that they feel more empathy towards their child and that the DISCO has been a therapeutic process for them. It helps parents develop a deeper and shared understanding of autism and what it means for their child specifically.
ADOS-2 Assessment With Your Child
Another psychologist in the team meets with the child for an assessment called the ADOS-2 – Autism Diagnostic Observation Schedule, Second Edition. This assessment tool is widely used in the UK and internationally. It is conducted by one professional (usually a psychologist, paediatrician or child psychiatrist), sometimes alongside a second professional to ensure consistency and accuracy. The ADOS-2 is used from toddlers and young children right through to adults, but there are four different “modules” (variations of the assessment) depending on the age of a person. For example, a ten year old in mainstream school who has fluent language skills is likely to be administered module 3, whereas an 18 year-old with fluent speech would be given module 4. Children with developmental disabilities may receive module 1 or 2, which rely much less on verbal ability.
During the ADOS, the psychologist chats with your child and intersperses this with a series of short tasks. The tasks are designed to elicit information about your child’s behaviour in social situations, how your child plays, any repetitive behaviors they display, their understanding of friendships and relationships, and many more areas. Your child’s responses are scored and this score is used to determine whether your child fits within the autism spectrum diagnosis range. Note that the ADOS should never be used as a diagnostic instrument on its own to diagnose autism. These test results should form one part of the picture, within an in depth evaluation.
Occupational Therapist Assessment
Autistic children generally have a different sensory profile to children who do not have autism. For example, they may be more sensitive to noise or smells. Autistic children also often (but not always) have movement or co-ordination issues. Thy may have differences in the “lesser known senses” of interoception, proprioception and vestibular processing.
Occupational therapists are experts in sensory processing and in movement. They will assess which areas a child is struggling in. They make recommendations such as equipment, strategies or therapy. The occupational therapist meets with you and your child for around an hour and a half, gathering detailed information about your child’s symptoms.
School Observation and/or Interview With School Staff
In children ages 4-11 our assistant psychologist conducts a school observation for half a day, plus an interview with the child’s teachers and/or teaching assistants. For older children or teens, we may conduct both the observation and interview or just the interview alone, depending on a number of factors including consent.
The school observation is an essential opportunity for us to observe your child’s social skills within a natural setting, both with their peers and with adults. We also ask the teachers about their views on your child’s social interaction, ability to cope with changes and transitions, communication skills, sensory processing, repetitive behaviours, and any other important information they have observed.
Once all parts of the autism assessment are complete, the lead psychologist meets with the other members of the team to make a diagnostic decision. Then, they write a comprehensive report. This contains detailed recommendations about how you and your child’s teachers can help them begin to flourish.
You will receive an additional pack of reports including the ADOS report, occupational therapy report and separate recommendations, and school observation report.
We also write a shorter, strengths-based letter to the child summarising the process they have been through, the outcome, and our recommendations.
Follow Up Meeting
Once the assessment is complete, the family meet with the lead psychologist to discuss the assessment results. They talk through the recommendations (treatment plans) and any questions the family might have. If the diagnosis of autism spectrum disorder has been given the family and psychologist will talk through what this means for your child. The psychologist will always discuss your child’s strengths within this mix.
You can choose who attends this appointment. Usually both parents and child attend. Sometimes (especially with younger children) parents attend alone. Occasionally older teens choose to attend alone without their parents.
How Other Services May Vary in Their Approach
Some autism assessments are led by a paediatrician or a psychiatrist instead of a psychologist. There may be other professionals involved too such as a speech and language therapist.
Whether your child has the assessment in the NHS or in an independent service, the assessment should be carried out by a team of two or more different professionals, known as a multidisciplinary team. The parts of the assessment may vary. For example, instead of the DISCO, some services use a computerised interview called the 3di (“Developmental, Dimensional and Diagnostic Interview”), or an interview called the ADI-R (Autism Diagnostic Interview – Revised).
Since the pandemic, some services (in the NHS and privately) have started to do autism assessments entirely online. An online adaptation of the ADOS-2, called the BOSA, has been developed.
What are the Diagnostic Criteria for Autism?
There are two diagnostic systems that professionals use in the UK to diagnose autism. The are called the DSM-V and the ICD-10. This article doesn’t describe the diagnostic criteria for autism but you can read about the diagnostic systems here.
In summary, Autism Spectrum Disorder (ASD) is considered to be a neurodevelopmental disorder that affects communication, social interaction, and behaviour. The DSM-5 diagnostic criteria require the presence of “persistent deficits” in social communication and interaction, as well as restricted, repetitive patterns of behavior. Sensory processing difficulties or differences are typically also present. Symptoms must be present in early childhood and cause significant impairment in functioning.
Many services such as my own emphasize the strengths that autism can bring as well as potential problems. For example, many autistic people have an incredibly strong eye for detail and may have a superior long-term memory for certain things such as facts. Services like Everlief always explain to families that autism is a difference in the brain works, rather than a deficit. However, to meet the diagnostic criteria, there must be day-to-day difficulties in the child’s behavior or functioning. The way we see it, this may be caused by the world being set up for neurotypical children, rather than a problem within the child.
For example, mainstream classrooms often consist of more than 30 children. They can be noisy and visually overwhelming. This may cause a high level of stress for your child is their autism means they are sensitive to noise and visual stimuli.
How Can I Get an Autism Assessment for My Child Through the NHS?
The “pathway” to getting an autism assessment varies depending on where in the UK you live and the age of your child. Generally it starts with your child’s GP or school. In many areas CAMHS carry out the autism assessments. In some areas CAMHS only assesses older children. The community paediatrics team assesses younger children. Usually under 5s are assessed by the paediatrician’s team rather than CAMHS.
In some areas, you complete some screening questionnaires at the beginning of the process. There are many different types of screening questionnaires. These help professionals to decide if further assessment is warranted. Screening questionnaires should never be used on their own to diagnose a child.
In some areas sadly the waiting time for an NHS autism assessment is very long (two years or more).
Where Can I Find a Service Offering a Private Autism Assessment in the UK?
The best place to find a service is to use the National Autistic Society’s Directory. You may also be able to find a service using the British Psychological Society’s Directory of Chartered Psychologists.
Are NHS and Private Autism Assessments Equally Valid?
Yes, if you have a thorough multidisciplinary team assessment privately it is as valid as a thorough multidisciplinary assessment in the NHS.
If a school, local authority or NHS service suggests that this is not the case, their view is based on misinformation and you should challenge it.
I have worked both in the NHS and private practice. Private assessments are often (but not always) more thorough than NHS assessments, as these teams tend to have more time and resources available.
Can a Psychologist Diagnose Autism?
Yes. Here are some of the healthcare professionals who may form a part of the comprehensive evaluation for your child:
- Clinical psychologist (child psychologist)
- Paediatrician (often known as a developmental pediatrician in the US)
- Occupational therapist
- Speech and language therapist (known as a speech-language pathologist or speech pathologist in the US)
What Happens After My Child’s Autism Assessment?
The report you receive after the assessment should contain recommendations. These recommendations should cover all areas of need including any mental health and academic concerns. This will enable you, your child’s teacher’s, and other professionals who are involved to develop a plan to support your child.
Getting a diagnosis of autism does not automatically entitle your child to specific support, such as financial help or an Education and Health Care Plan (EHCP).
Further support may be available through:
- Your child’s school.
- The NHS.
- Voluntary sector organisations. The National Autistic Society has many active local branches.
- Independent services like Everlief who offer follow-up support and therapy.
Many services offer follow up support. My clinic, Everlief Child Psychology, has partnered with several other services to develop an online course for parents of newly diagnosed children called Embracing Autism.
What Recommendations Can I Expect From My Child’s Autism Assessment?
The best autism assessments make recommendations that take account of your child’s needs in all areas of life. For example:
- Adjustments you can make at home, to help your child manage transitions in everyday life.
- Support strategies at school.
- Professional support if needed, such as psychological therapy if anxiety is an issue, or occupational therapy sessions to improve sensory integration.
Your report should also contain further sources of information. This could include books, websites, podcasts and local organisations.
Dr Lucy Russell is a UK clinical psychologist who works with children and families. Her work involves both therapeutic support and autism assessments. She is the Clinical Director of Everlief Child Psychology, and also worked in the National Health Service for many years. In 2019 Lucy launched They Are The Future, a support website for parents of school-aged children.
Through TATF Lucy is passionate about giving practical, manageable strategies to parents and children who may otherwise struggle to find the support they need.
Lucy is a mum to two teenage children. She lives in Buckinghamshire with her husband, children, rescue dog and three rescue cats. She enjoys caravanning and outdoor living, singing and musical theatre.
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