How do I get my child assessed for autism and what is involved?
I thought I’d write this post as I often see families of children and young people coming for an autism assessment who may not have any idea what to expect. I realise that this can make it seem much scarier and it also makes it harder for parents and carers to prepare the child in advance regarding what is going to happen.
I also think that it is useful for other professionals and people in the child’s wider world to understand what the process is likely to involve, and also what it probably wont involve. This enables others who support the family (including professionals asking for an autism assessment) to give realistic expectations of the process.
Just to clarify, when I refer to autism assessment, I am using ‘autism’ to include the whole autistic spectrum – both those individuals who may have more severe difficulties and those for whom their difficulties may be more subtle or who have many skills and strengths in addition to their social communication difficulties, those who we might think of as having ‘Asperger syndrome’. However, Asperger syndrome is no longer a diagnosis included in the Diagnostic and Statistical Manual for Mental Disorders (DSM), that most clinicians use. I will write a separate blog post on this issue and you can read more about the changes in the new edition of the DSM that area relevant to autism in this useful article by the National Autistic Society.
So, the beginning of the process usually starts with those closest to the individual. You may have noticed that your child appear different to others their age in terms of their behaviour, play or communication. You may have sought advice from a health visitor, speech and language therapist, paediatrician or other medical doctor in relation to your concerns. If you haven’t, or concerns have been raised by someone else who knows your child (e.g. their teacher or nursery staff), the first port of call would be to arrange to get your child seen by a paediatrician. In the UK, this is a medical doctor who specialises in working with children and young people and who has specific training in child development and children’s medical conditions. If you are already seeing another health professional such as a health visitor, ask for them to refer your child to a paediatrician. Alternatively, you can go and see your GP to explain your concerns and ask for them to refer your child to the paediatrician.
For those of you who have already seen a paediatrician, you will know that they will generally undertake a brief assessment of your child’s overall health and development. This tends to include weighing and measuring their height and the circumference of your child’s head. They will also usually physically examine your child and listen to their heart and breathing. They usually ask about the pregnancy, birth and labour and your child’s early development, as well as exploring your current concerns. It is very helpful if you can clearly describe your observations that concern you and be prepared to give examples to help the paediatrician develop a picture of the nature of the difficulties. As with any appointment or meeting, it can be helpful to prepare a list beforehand of the things that you want to discuss so that you can ensure you mention everything that you wanted to.
The paediatrician may see you again for a review appointment to gather further information, or they may refer your child to other health professionals who can directly assess aspects of your child’s development that you are concerned about in more detail. A speech and language therapist may become involved to gain a better picture of your child’s language development and communication skills. A physiotherapist or occupational therapist may assess their motor (movement) skills and practical abilities (e.g. dressing, using cutlery, holding a pencil).
If there are still concerns that your child is presenting with particular difficulties that are suggestive of an autistic spectrum disorder, the health professionals involved usually ask a specialist who is knowledgable and experienced in working with autistic spectrum disorders and other social communication difficulties to see your child for further assessment. Who this will be depends on the local arrangements in your area for this type of assessments. In the UK, there should be a local autism spectrum disorder ‘assessment pathway’ in every area. This sets out who exactly does these assessments where you live, how you can access them (e.g. referral from your paediatrician) and what steps are involved.
Generally, a specialist multidisciplinary team (a team made of up professionals from different backgrounds, who have different roles and expertise) will be responsible for ASD assessments. It is suggested in the UK NICE guidelines (these are guidelines for best practice, based on available evidence) on recognition referral and diagnosis of autism in under 19s that children and young people are assessed by a multidisciplinary team that includes a medical doctor or psychiatrist (a medical doctor who has specialised in mental health), a psychologist (this may be a clinical psychologist and/or an educational psychologist), speech and language therapist, occupational therapist, specialist nurses, and other practitioners who are experienced and knowledgable about ASD. It is worth noting that not all local areas have a team of these professionals specialising in ASD and it may be just one or two professionals who do this kind of work in addition to their other work as they have an interest in this area.
It is not typical for all of these professionals to be involved all at the same time in your child’s ASD assessment, although if your child has complex needs then they may be. Professionals may work together as part of a team on a day to day basis and be based in the same place, or may work as a ‘virtual team’ where they are not physically located together and are based across different departments and locations. Some teams are based within community paediatric (children’s health) services, whilst others are based in child and adolescent mental health services (CAMHS). This depends on your local setup.
When it comes to the actual autism assessment, there is usually a long waiting list due to a high demand for this type of assessment and limited resources to meet this demand. I have worked in several different specialist autism teams in different NHS trusts across the country and it is a similar picture with waiting lists across the UK. Typically, you can expect to wait anywhere between 6-12 months for an autism assessment. You may be seen sooner for an ‘initial assessment’ with the service if they have never worked with you or your child before, but there is generally a long wait for the actual autism assessment.
It is common for you (and sometimes your child’s school) to be sent out questionnaires to fill in prior to the autism assessment appointment(s). This gives the team useful information about your child and their difficulties so that they can plan how they will do the assessment. You may also need to ‘opt in’ to the assessment in some places – this is where you confirm that you still want an appointment and there is usually an expectation that you will return something or contact the team to confirm this. If there has been a long wait between your child being referred for an autism assessment and them coming to the top of the waiting list, the team may contact you to check that you still want to be seen in case the situation has changed. Some teams will contact you to offer short-notice appointments (e.g. if someone else has cancelled theirs), so it is a good idea to remember to contact the team if your contact details change (e.g. if you move house or change your mobile number).
Most teams will send out an information leaflet giving you some details about the team, where the appointment will take place and what it might involve. If you aren’t provided with this information, it can be helpful to phone up and ask any questions you may have, such as whether your child needs to come along to the first appointment or just parents/carers, how long it will last, who they will see, and anything else you might be wondering, such as whether they have free car parking.
At the first appointment, you should meet the main person or people who will be co-ordinating your child’s ASD assessment. They should introduce themselves so that you are clear about what their names and roles are and how to contact them if you need to. They should also explain at this point exactly what the assessment will involve and check that you understand this and agree to go ahead. If your child is 16 or over, your child will need to understand and give consent for the assessment to go ahead.
Different teams do the assessment differently – everything may be completed over a single longer appointment that both yourself and your child attend; or multiple appointments may be scheduled and/or they may ask permission for your child to be observed in the school setting. There is no set way to do an autism assessment and so different teams do it differently according to their staff resources and local demand. It would be much easier if there was a simple blood test for autism, but at the moment there isn’t and assessment involves gathering detailed information about your child’s development, functioning and behaviour. It is crucial that you understand exactly what the team assessing your child plan to do, how long this will take and when you will receive feedback on the outcome.
It is common practice for two professionals from different disciplines to conduct the assessment. This may be a paediatrician and a speech and language therapist, or a speech and language therapist and a clinical psychologist, or a psychiatrist and a specialist nurse, or another combination. The important thing is their knowledge and experience of ASD and that they are bringing slightly different expertise and viewpoints. Generally, it is not that the doctor or any other member of the team is more senior or experienced in ASD, as team members tend to have a similar level of specialist knowledge and experience. However, they will bring specific skills from their professional background too. So, as well their specialist knowledge and skills in autism, medical doctors and nurses specialise in physical health, psychologists specialise in cognitive and other psychometric assessment as well as other areas, speech and language therapists specialise in language and communication, and occupational therapists specialise in everyday skills and sensory issues.
Typically, an assessment will involve the following:
Direct observation of your child – including their communication and interaction skills and their play (or creative skills if they are older). This may be done informally, or using a formal assessment tool called the Autism Diagnostic Observation Schedule (ADOS)
Parent interview – the clinician(s) will ask you about current difficulties and concerns, as well as a developmental history that explore when they met their milestones and aspects of their development (it may be useful to dig out their ‘red book’). Again, this may be done using a formal assessment tool. There are a few available to clinicians, including the Autism Diagnostic Interview – Revised (ADI-R), the Developmental Dimensional and Diagnostic Interview (3Di), and the Diagnostic Interview for Social and Communication Disorders (DISCO).
Information from school – this may be gained via a questionnaire sent to school or a telephone conversation with a member of staff, and/or direct observation of your child in their school setting
Additional assessments, depending on the particular issues your child has and the availability of resources, may include:
Speech, language and communication assessment – by a speech and language therapist
Cognitive functioning (intellectual ability) assessment – by a clinical or educational psychologist
‘Theory of mind’ skills assessment – this is the ability to think about and understand others’ thoughts, feelings, emotions and behaviours
Emotion recognition and understanding assessment – both in terms of their own and others’ emotions
Everyday living skills (adaptive functioning) assessment – further detailed assessment of specific skills such as dressing, cutlery use and holding pencil may be completed by an occupational therapist
Sensory profile assessment – this looks at whether your child seeks out or avoids particular sounds, sights, smells, tastes, textures or sensations.
Mental wellbeing assessment – a clinical psychologist may assess your child’s emotional functioning, self-esteem and overall wellbeing.
Behaviour assessment – if your child is engaging in problematic behaviours these will be explored in more detail to understand their function and think about what need the behaviour is meeting
There are lots of different assessment tools available to health professionals, so even those within the same team may prefer slightly different methods.
All of these assessments are to enable to clinicians to get to know your child and their individual areas of strength and difficulty and to build up a detailed picture of their functioning. As a clinical psychologist, I see this process as putting together different pieces in a jigsaw to build up an overall picture of your child. We call this a ‘formulation’ in clinical psychology, where we develop a picture of the presenting issues, what may have led to them, and what may be making them worse or better. This helps us think about a plan for what will help (we call this an ‘intervention’).
Once all the different parts of the assessment have been completed, which is a process that may be done over one long appointment or over several appointments over a period of time, the findings should be fed back to you so that you understand the outcome and conclusions of the assessment and what will happen next. It is good practice to also summarise all the information gathered as well as the assessment outcome and conclusions, in a written assessment report. You should get a copy of this and it also typically gets sent to your GP so that it can be added to your child’s main medical record, and also to the person who referred your child for assessment. There may be other people already involved with your child such as an educational psychologist, who you may wish to share a copy of the report with.
I also recommend to parents that they arrange a meeting with the Special Educational Needs Co-ordinator (or ‘SENCO’) at their child’s school to sit down and go through the report and what this might mean in terms of how they understand any issues that are apparent in school. It is also important in order to discuss any extra support that your child may need in school as a result of their difficulties or anything that they may need doing differently. It might be that the school feels that they will find it difficult to meet your child’s specific needs within the existing resources and staff they have and they may suggest you apply for an Education Health and Care (EHC) Plan, which is what has replaced what was formerly known as a statement of special educational needs. I will talk more about these in a future post.
The team that assess your child may be able to offer you further advice or support, either through another appointment with you or workshops/groups that they run for parents. If your child’s difficulties weren’t thought to warrant a diagnosis of ASD, they may point you in the direction of another service or team that may be better able to support you with your child’s difficulties. I plan to write another post on the various things that present similarly to ASD.
Sadly, in the UK, many areas are limited in what they can offer in terms of support following a diagnosis of ASD in the NHS. However, there is often a specialist autism team in local education services that can help support school and families of children and young people with ASD. There are also lots of local parent organisations that often offer a number of resources and supports for children with ASD and their families. It can also be useful to get in touch with parent organisations for support from others who have been through similar experiences with the emotional aspects of having a child with ASD and coming to terms with the diagnosis.
Every local council in England also has a ‘local offer’ from the local authority of services for parents of children with additional needs and it is worth googling the ‘local offer’ for your area to find out what you may be entitled to. There is usually a local ‘parent partnership’ (now often known as Information Advice and Support, or ‘IAS’) organisation included by the council as part of this local offer that provides parents with advice on things like EHC plans, Disability Living Allowance (DLA) and local supports and resources available for children with additional needs and their families.
I plan to write a separate post in the near future on the ‘aftermath’ of a diagnosis, which will cover issues such as whether to tell your child, who else you should tell and the emotional experience of your child being diagnosed with a lifelong development disorder.
Finally, I get asked quite a lot about whether you can pay to have an autism assessment done privately if you want your child to be seen sooner than they would be via NHS services. If you are willing to pay or are covered by health insurance, there are local independent practitioners offering these in most areas of the UK.
I myself offer an autism assessment service for children, young people and adults in the Greater Manchester area and beyond by negotiation. I offer evening and weekend appointments for assessment, as well as home visits.
It is really important that you ensure that you are dealing with a credible professional who is recognised by their relevant professional body (General Medical Council for medical doctors; Health and Care Professions Council for educational or clinical psychologists, speech and language therapists and occupational therapists) and has the appropriate qualifications and insurances for their practice.
I hope this post has been useful and please do post any comments or questions and I’ll do my best to answer.