2. What’s involved in a diagnostic assessment?

Thank you for visiting this website. I’m afraid that you won’t find any bells and whistles here–just information about me and the services I can offer, plus a little bit of background about the diagnostic process.

My name is Philip Whitaker and for the final 18 years of my Local Authority career I worked as a Specialist Senior Educational Psychologist specializing in autism spectrum disorders (ASDs). Since leaving Local Authority employment I’ve worked independently in the same field.  Throughout my career, I’ve worked directly with children, families and school staff, providing advice and support to meet the the needs of youngsters with ASD. I’ve been lucky enough to work in 2 different Local Authorities which, in their different ways, were considered to be leaders in terms of provision for youngsters with ASD. Leicestershire developed the first ever autism outreach service to provide training and support for children with ASD, their teachers and their parents. Northamptonshire pioneered training in the TEACCH approach and developed a network of ASD-specific provision using this approach. I’ve seen what can be achieved when good levels of resourcing and the right training and support for staff and parents have been provided. I’ve also seen what can go wrong when this isn’t available.

I can be contacted on philipwhitaker1@gmail.com

QUALIFICATIONS AND TRAINING

Training

My first degree was from the University of Cambridge in 1973 and I qualified as an Educational Psychologist at the University of Nottingham in 1979, after a 2 year MA. In the first 15 years of my career I worked in 2 English Local Authorities and in Toronto, gradually specialising in work with youngsters with complex learning, communication and developmental difficulties. I was extremely fortunate to take on one of the UK’s first Specialist Senior Educational Psychology posts in the field of autism and worked in this role from 1995 until 2012.

During my career I’ve undertaken extensive further training and acquired a range of additional qualifications:

  • Training and experience in the use of most of the widely recognized and best established ASD-specific assessment and diagnostic tools (you can find out more on the Diagnosis page)
  • Accreditation and wide experience as a TEACCH trainer. TEACCH is one of the best established and most comprehensive approaches to the education and management of people with ASD. You can find out more by clicking this link: http://teacch.com.
  • Training in the use of SCERTS. This is a comprehensive, evidence based approach which enables the detailed planning of individual teaching programmes. These are focussed on a range of very specific skills and understanding in the core areas of development affected by the young person’s autism.
  • Training in Counselling Studies (Vaughan College, Leicester), Solution Focused Brief Therapy and Cognitive Behaviour Therapy, all of which have proved extremely useful in working with some individuals who are on the autistic spectrum.

Experience

Perhaps the most important thing you need to know about me is that for all of the last 17 years I have continued to have extensive casework involvement with youngsters with ASD, their families and their schools. In my specialist role I have tended to be asked by colleagues to become involved with the most complex or challenging cases. I have also been involved in follow-up work with individual children for extended periods, either at home or in school. I hope this has kept me in touch with the practicalities of working and living with ASD–and with the challenge of turning tidy reports into messy reality!

Through the course of my career I have had a range of responsibilities and experiences:

  • Developing and working with advisory teaching teams to develop advice,support and training for schools and families
  • Managing the development of a specialist service for the families of pre-school aged children (including the first ever use of EarlyBird in a Local Authority context)
  • Working with Local Authority officers and schools to develop provision for children and young people with ASD
  • Working with the National Autistic Society to pioneer the use of their Accreditation Framework with Local Authority Services and extensive involvement in monitoring and evaluating provision within specific schools (as part of Local Authority inspection teams)
  • Extensive experience in devising and delivering training in Local Authorities, universities and in conferences across the UK (see the Training page for more details)
  • Leading the process of developing multi-agency diagnostic pathways and procedures in 2 counties and extensive involvement in diagnostic assessment (including a formal responsibility for ‘second opinion’ diagnostic assessments where teams have been unable to reach a clear conclusion).

Fees

Work is charged at the  rate of  GBP 65 per hour (plus travelling expenses at 55p per mile), but some negotiation is possible, particularly in the case of more complex assessments. The likely time required for a particular piece of work is discussed and agreed beforehand. There is no charge for initial discussions and any review of existing paperwork, prior to agreeing my involvement. Where travelling will take longer than 1.5 hours per day there is a charge of GBP 20 per hour beyond the first 1.5 hours)

Publications

How much education—what sort of psychology: a critique of the objectives approach to the education of slow learners. (1988) Educational Psychology in Practice, 3,4, 11-16

Canadians caught in the act: Formal assessment in Canada—significant differences, shared dilemmas and the role of the school psychologist. (1992) Educational Psychology in Practice, 8,1, 3-9

Mainstream students talk about integration. (1994) British Journal of Special Education, 21,1, 13-16

 Working with challenging behaviour. (1996) Lucky Duck Publishing. (co-author)

 Children with autism and peer group support: using ‘circles of friends’. (1998) British Journal of Special Education 25, 2, 60-64

 Autism: How to help your young child. (1998) London: National Autistic Society. (co-author)

Asperger syndrome—practical strategies for the classroom. (1998) London: National Autistic Society (co-author)

Autism and challenging behaviour: making sense—making progress (a guide to preventing and managing challenging behaviour for parents and teachers). (2001) London: National Autistic Society.

Supporting families of pre-school children with autism: what parents want and what helps. (2002) Autism 6, 4, 411-426

 Fostering communication and shared play between mainstream peers and children with autism: approaches, outcomes and experiences. (2004) British Journal of Special Education 31, 4, 215-222

 ‘Why’s it so difficult?’ Sharing the diagnosis with the young person. (2006) In D. Murray Coming out Asperger: diagnosis, disclosure and self-confidence. London: Jessica Kingsley Publishers.

Provision for youngsters with autistic spectrum disorders in mainstream school; what parents say—and what parents want. (2007) British Journal of Special Education  34, 3, 170-178

DIAGNOSIS

As you may well be aware, there are still no medical tests for a diagnosis of autism (or autistic) spectrum disorder.  When a professional is trying to decide if a youngster is on the spectrum, he or she is looking for particular types and degrees of difficulty, and for particular patterns of development in each of these areas of development: social interaction; social communication; flexibility of thinking and behaviour. The first 2 of these 3 areas of development are very closely intertwined and are now treated as a single aspect of the diagnostic criteria (after the most recent revision to the DSM system. To get a comprehensive and reliable picture, you need information from a range of sources. Guidelines published by NICE (the National Institute of Clinical Excellence) in 2011 give recommendations about the content of the assessment. You can see these for yourself by clicking on this link:    (http://guidance.nice.org.uk/CG128/QuickRefGuide/pdf/English). As you’ll see, the core ingredients  recommended by NICE include:

  • Detailed questions about the parent’s concerns
  • A detailed developmental history, preferably using ‘an autism-specific’ tool to gather this information
  • Direct observation and assessment of specific social skills, communication skills  and behaviours, consistent with ICD 10 and DSM5 criteria (the official diagnostic criteria). Again, it recommends the use of a recognized autism-specific assessment tool

Often it is extremely helpful to have observations from other settings, and information from other sources (particularly the youngster’s school or nursery). The NICE guidelines also recommend that a doctor (typically a Paediatrician) takes a medical history and carries out a physical examination. Although ASD cannot be medically diagnosed, this is to check if the youngster has other physical conditions relevant to the diagnosis.

I am able to offer diagnostic assessments that are in full accordance with these core ingredients:

  • I am qualified and experienced in the use of the Autism Diagnostic Interview (Revised). The ADI (R) is often referred to as one of the ‘gold standard’ assessment instruments and is widely used in research. I am also qualified in the use of the Diagnostic Instrument for Social and Communication Disorders (DISCO) and the Developmental, Dimensional and Diagnostic Interview (3Di).
  • I am  trained and experienced in the use of the Autism Diagnostic Observation Schedule 2 (ADOS). This is a battery of play based activities, tasks and discussion topics, with specific modules selected according to the language skills of the child. It is commonly used alongside the ADI-R and, again, is seen as one of the ‘gold standard’ assessment tools.
  • I have considerable experience of observing youngsters in their home and educational settings, where subtle (and sometimes not so subtle!) signs of possible ASD are apparent. This is particularly important where it is necessary to get a clearer view of a child’s interactions with peers.

In my experience, it can also be useful to seek information from staff in the child’s school or nursery—and I will always try to liaise with other involved professionals, if possible. In addition,  I would always recommend that parents also seek the involvement of a paediatrician, but in most instances a sound diagnostic conclusion can be reached on the basis of assessments and observations that I’ve described above.

The different components of the assessment do not need to all take place at one time or in one setting. Practical arrangements can be tailored to suit your and your child’s needs.  The first step would always consist of discussing your concerns and getting key information about your child and any previous assessments. I can then plan the separate components of the assessment and give you a clearer picture of the likely time and costs involved. Once completed, the findings of the assessment, its conclusions and any suggestions for further action will be provided in writing. Please contact me on philipwhitaker1@gmail.com If you  would like to see and hear more about the process of diagnosis and what it may mean for you and your child, you can view the podcasts below on You Tube by just clicking the links. I produced these for parents of newly diagnosed children with the aim of answering many of the questions that parents often raise in the weeks following their child’s assessment.

After diagnosis 1—making sense of ASD http://youtu.be/CMuztO0DA8Q

After diagnosis 2—understanding your child http://youtu.be/WEWe9UPxIJM

ASSESSMENT

The diagnosis is really  just the beginning of the process of understanding a child’s or young person’s needs. The diagnosis acts as a valuable signpost to those aspects of the youngster’s development that may need more detailed assessment–and it provides broad pointers to the types of help and provision a child may need. However, effective intervention can only be built on a comprehensive and detailed assessment of the youngster’s individual needs. This should provide the information needed to set appropriate targets across all the key areas of functioning. It should also provide a detailed profile of the child’s learning style, strengths and difficulties. Without this, it can be difficult or impossible, to develop and use appropriate teaching and support stragegies. In turn, all this information is needed before taking crucial decisions about the type of school and the level and nature of support necessary to meet the child’s needs.

For the last 17 years, my specialist role has meant that I have been responsible for carrying out assessments on some of the most complex and needy youngsters. I am able to draw from a wide range of assessment tools and frameworks, and am known for producing reports that are both comprehensive and (just as importantly) comprehensible. My overiding aim is always to help those who live and work with a child make sense of his or her needs, and to provide practical strategies and directions for promoting the youngster’s development.

These reports can be shared with school staff and other Local Authority or Health Service staff who are involved with your child. If your child is undergoing statutory assessment, they can also be submitted as part of the information that you’re asked for during the statementing process. Independent reports like these are often submitted as evidence when parents are unhappy with proposed EHC Plans and take their case to the Special Educational Needs Tribunal.

Getting started. When I’m contacted about a possible diagnostic assessment, my first step is always to review any available reports, letters-or any sort of available information! Often this includes scribbled notes, parent diaries, video clips and so on. As part of this information gathering process I may also ask a parent to complete the Social Communication Questionnaire1. My aim is to help parents and youngsters avoid the time and expense (not to mention stress!) that can be involved in a diagnostic assessment unless there is a reasonable prospect that the youngster does meet diagnostic threshold. I should stress that there’s no charge for this review of available information. If you or we jointly, do decide that a full diagnostic assessment doesn’t seem appropriate-or that some other route would be better-then that’s absolutely fine.

What next? Once we’ve agreed to go ahead, there are 3 key components to the assessment:

  • Direct work with your child. I use the ADOS during this 1-1 session and I should stress (and it often helps children to know) that this doesn’t look or feel like most people’s idea of a ‘test’. The ADOS has 4 modules, each geared to a particular age range, and each module consists of a range of activities (more play based with younger children and discussion based with older individuals). The type of activities, and the flexible way in which they can be presented, are all designed to put your child at ease and give the best chance for him or her to display their typical social and communication skills. The ADOS activities also provide an excellent jumping off point for children and young people to talk about the way they see and experience the world. I regard this process of helping youngsters articulate and share this information as particularly important with individuals whose presentation is more subtle (or less typical) and whose needs can be missed. This part of the assessment usually takes 2-3 hours (with breaks and down-time as needed by the youngster.
  • Extended discussion with you (and with any other family members if you feel this might be helpful). This discussion is based on the Autism Diagnostic Interview (ADI). The questions in the ADI are all focussed on the diagnostic criteria, looking in detail at social interaction, social communication and issues in terms of flexibility of thinking and behaviour2. This interview typically takes 2 hours. The aim is to build up a detailed picture of how your child presents at home and any changes since he or she was a 4-5 year old. The reason for discussing this stage of your child’s life is that looking back (with the benefit of hindsight), features of possible ASD are sometimes clearer when children are younger. These features may get harder to spot once a child’s in school. This can be due to a number of things: learning from or copying other children; direct teaching or ‘social coaching’ as you and staff try to help your child; a tendency for some youngsters to develop coping strategies that ‘mask’ possible ASD-something that may be commoner in girls.
  • Discussion with key staff in school. Last but not least, a child’s school or other educational setting usually provides vital information-especially about relationships and interactions (with other children and less familiar adults in particular) and about a youngster’s flexibility. I therefore always carry out extended discussion with whichever member of staff knows a youngster best, either in person or by phone. Sometimes direct observation in school is needed, with everyone’s consent and, if it’s appropriate, given the youngster’s age.

Where? The best setting for the 1-1 part of the assessment is wherever the particular child is most at ease and most likely to display his or her typical style of communicating, interacting and behaving.

  • For children and young people in school (or another educational setting), assessments seem to work best when carried out in that familiar setting. This obviously means a school needs to be willing and able to host the assessment. Once parents have talked with school about the need for a possible assessment, in my experience school staff are almost always keen to help with the necessary arrangements (and-with your permission- I usually communicate directly with the relevant member of staff to sort out the practicalities).
  • Where a youngster isn’t attending school, I can carry out the one-to-one part of the assessment at home. For obvious reasons, a parent needs to be there as well, but not physically present in the room where the assessment is taking place (unless the child is very young). All that’s needed is somewhere to sit and a surface to put materials on.
  • As a result of experience during the pandemic, I’ve learned that discussions with parents remotely, via Microsoft Teams, can work very well. They also offer a bit more flexibility in terms of timing and duration. This arrangement also means that precious space in the school isn’t tied up for the whole day. If this is not possible for any reason, then there is always the option of meeting in school or at your home.

When? Since I work independently and on a part-time basis, I’ve had the luxury of only taking on one assessment at a time. This means I don’t have the distractions and competing demands on my time and attention that are part and parcel of working for a bigger organisation. As a result, I’m almost always able to complete the assessment and produce the first draft of my report by the end of the second of 2 consecutive days. Once I’ve looked at any available information and spoken to staff at school, assessments usually follow this pattern:

  • I usually work with your child individually (the ADOS session) during the morning of the first day-and there’s usually time to include any necessary observations, as well. From experience I’ve found that observation during less structured times-during morning break or the start of lunchtime-are much more informative than carrying out observations in lessons.
  • Most of my discussions with parents usually take place in the afternoon of the first day. If your work or family demands make this difficult, then I can arrange to have these discussions during an evening (and usually do this before I see your child).
  • The second day is spent analysing all the information that I’ve gathered and producing the first draft of the report. I’m almost always able to get this to you by the end of day 2.
  • I should stress that this is very much a first draft. I’m always very grateful to get any comments, questions (or corrections!) from parents (particularly if anything I’ve written is unclear). I’ll then work on a 2nd or 3rd draft until we have a final version that’s as clear and accurate as possible. There’s no urgency or deadlines in this process. Parents need to have whatever time it takes to process and think about the contents of the report and any amendments that might be needed.
  • If your child’s in school or other educational setting, I would always suggest sharing the report with key staff in school so that I can then (with your agreement) take account of any questions, concerns or additional information.
  • Once the report is in its final version, if another professional later becomes involved with your child and has any questions about its contents, I’m always happy to talk directly to them (with your permission, of course). There’s no additional charge involved, by the way.

What does a diagnostic assessment cost? Since I charge by the hour, I can’t give you an exact cost, but my invoices over the last three years have all been in the £950-1200 range. If, for any reason, it looks as if more time may be needed to complete an assessment, then I’ll do my best to give you an idea of the possible total, before we agree to proceed.

Although I realise that this is a significant sum for very many families, if you search the Internet for equivalent services, then your quickly find out that almost all of them (? all) charge significantly more for diagnostic assessments. When I’ve been asked about this difference, I usually mention the following points:

  • I’m in the very fortunate position of having a pension and have very few overheads-I don’t need to employ anyone else and I don’t need to rent a smart consulting room (or any kind of room!).
  • I’ve always wanted to make my services affordable and this has become an even higher priority due to the cost of living crisis and the acute waiting list problems for NHS assessments.
  • Though they weren’t formally diagnosed, my first contact with youngsters with ASD goes back to 1974, when I worked as a nursing assistant in a longstay residential setting. This led to a lifelong fascination with ASD. I’ve been priveliged to work youngsters with ASD and their families for so many years and hope to carry on doing so for as long as I can.