Autism Spectrum Psychology: A specialist diagnostic service

Hello and welcome

Thanks for visiting this website.

A bit about me.

I’m Philip Whitaker, an EHCP registered Educational Psychologist who, for the last 30 years has worked almost exclusively with youngsters with ASD, their families and their schools. I’ve written and co-written a a dozen or so books and articles, all aimed at helping parents and professionals understand and meet the needs of youngsters on the spectrum. I’ve also delivered a lot of training for parents and professionals across the UK and abroad. There’s a lot more detail about my training and experience in the ‘blurb’ later on, but there are a few key points about my background that I’d like you to know:

• In the 2 Local Authorities I worked for until 2012 I played a key role, or led, the process of establishing multi-disciplinary ASD diagnostic pathways. This involved working closely with paediatricians, child psychiatrists, psychologists, education staff and parent representatives to agree a common approach to diagnosis. This included building a shared understanding of ASD, agreeing on diagnostic tools, training all colleagues in their use and ensuring their consistent application.
• I’m trained and experienced in the use of what are often referred to as the ‘gold standard’ diagnostinstruments: the Autism Diagnostic Observation Schedule-2 (usually referred to as the ADOS) and the Autism Diagnostic Interview (ADI). I’m also trained in the use of the NAS’ Diagnostic Interview for Social and Communication Disorders (DISCO) and the Developmental, Dimensional and Diagnostic Interview (3Di), the diagnostic tool developed at Great Ormond Street Hospital.
• I’ve had a lot of experience of working with girls displaying the more subtle manifestations of possible ASD. A significant part of my training involved working in Elizabeth Newson’s diagnostic clinics, leading to my later casework involvement with youngsters she diagnosed locally with PDA. Through this latter work (and direct consultation with her) I’ve built up a fair knowledge of youngsters who may be presenting the PDA sub-type of ASD.
• Since 2012, as an independent Psychologist, I’ve worked exclusively in the field of diagnostic assesssment. Much of this work has taken place across the Midlands, but I’ve also carried out assessments as far afield as West Yorkshire and Brighton.
• I accept referrals directly from schools (with parental consent) and from parents and carers. Over recent years, as school budgets have become even tighter, most of my referrals are now coming from parents. As a result, I’ve revised this website so as to ‘talk directly’ to parents and carers—but all the information also applies to schools and other similar organisations.

I can be contacted on philipwhitaker1@gmail.com

What’s involved in a diagnostic assessment?

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 Questionnaire. This is probably the best researched screening tool for identifying younsters needing a full diagnsotic assessment. 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 as the core of my 1-1 work with youngster. I need to 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 and the aim is to build up a detailed picture of how your child presents at home and anychanges 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. Thse features may become harder to spot once a child is in school as a result of wider social experience and a tendency for some youngsters to develop coping strategies that ‘mask’ possible ASD.
• Discussion with key staff in your child’s school or other educational setting can provide 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 have 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 carry out 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 have this session fore 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, and I’ll then work on a 2^nd or 3^rd draft until we can agree 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 my report.
• If your child is 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 we’ve agreed the final version of the report, 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 you 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 have 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. The training, knowledge and experience I’ve gained over the years has mainly been acquired during my local authority employment-that means it was paid for from the public purse. At the risk of sounding a bit pious, it seems fair enough to be offering a bit of pay-back.
• My first contact with youngsters with ASD (though they were not formally diagnosed as such) goes back to 1974, when I worked as a nursing assistant in a longstay residential setting. I knew immediately that I want to find out more-and my fascination with ASD, in its many forms, has continued to this day. I know I’m very lucky to still want to carry on working.

Will the diagnosis be ‘accepted’ by other professionals?

In the 13 years that I’ve worked independently across a wide range of local authorities and NHS trusts, this has never ever been an issue. When I’ve diagnosed ASD, my reports have been submitted as evidence which enables youngsters to access any local ASD-specific support services. My reports are also routinely submitted as part of the EHCP process. Similarly, NHS professionals routinely accept my reports and include them in youngsters’ medical records.

Possibly the most important reason for this situation is the level of detail and organisation in my reports. Against each of the crucial diagnostic criteria I set out the information I’ve obtained during the assessment and am clear about the source of each item. I include the findings and scores across the ADOS and take pains to ‘show my workings’, explaining the reasoning behind my conclusions.

When talking to parents about this issue I’m sometimes asked whether or not my assessments conform to NICE guidelines. The short answer is that they do not! So why are your reports accepted by Local Authority and NHS staff? There are a number of points to make in response to this (entirely reasonable) question:

• First and foremost, the NICE guidelines are just that-only guidelines. They’re not a legal requirement. Doctors have the discretion not to follow NICE guidelines, as long as they they can provide a satisfactory justification for not doing so. As one GP friend commented: “If we followed all the NICE guidelines, all the time, we’d only manage to see six patients a day!”. In the case of ASD diagnostic assessments the justification is very obvious and very simple:
  • Urgency. There’s complete agreement that early diagnosis is essential, not just in the best interests of a child or young person but also in the interest of parents and carers. It’s essential in terms of making sense of the youngster and beginning to address their needs. Delays of 2, 3 or even 4 years aren’t uncommon and that’s clearly damaging to the interests of the children, parents and carers and the schools attempting to meet their needs.
  • Access. Private diagnostic assessments typically cost between £2000 and £3000. Some lucky parents can afford these costs. They and their children escape NHS waiting lists whilst everyone else remains stuck in what can feel like an endless queue. This is the way of the world-but it’s clearly unfair and comes at a significant cost to those who are left waiting for a diagnosis. This leads to damaging delays in getting the right sort of understanding, support and provision.
• My assessments focus only on diagnosis. The NICE guidelines include a requirement to provide a “needs based management plan”, in addition to a diagnostic conclusion. This requires a range of expertise such as that offered by speech and language therapists, occupational therapists and clinical psychologists. The multi-professional nature of assessments that conform to NICE guidelines mean that they are much more costly and logistically complicated-with an obvious impact on the availability of appointments. In practice, manpower and resource shortages mean that this full range of expertise is rarely available. Some ‘teams’ may consist of only 2 professionals or may be ‘virtual teams’, with one key person seeing the child on his or her own, seeking information and opinions from other others who are not directly involved in the assessment. I can’t offer a multi-professional team-but I can offer a more flexible, speedier and less costly assessment. My assessments focus exclusively on the diagnostic criteria and use the 2 best researched and validated diagnostic assessment instruments
• It may also surprise (and possibly puzzle) you, to learn that there is no requirement in the NICE guidelines for contributions from any education professional and no requirement to seek information from a youngster’s school. It’s perhaps not surprising that frequently the ‘management plan’ resulting from such assessments is very general and generic.
• As previously mentioned, I always use the gold standard tools, the ADOS and the ADI, in all my diagnostic assessments. The NICE guidelines only make the broadest of recommendations about how the assessment is actually carried out, stating only that the professional should “consider using an autism specific tools to gather this information”. If the ADOS is used, in my experience, teams can place undue reliance on the ADOS score and insufficient weight on other sources of information. A particular issue is that often there’s nowhere near enough time available to discuss the child’s development in detail with parents-and any discussions may lack an ASD-specific focus. I believe very firmly in getting the most detailed picture possible from parents, using an ASD-specific assessment tool AND giving full weight to the information they provide when considering the overall picture.

Qualifications and training

1973 MA, Jesus College, Cambridge

1975 Post-graduate Certificate of Education, University of Leicester

1979 MA (Educational Psychology), University of Nottingham

Qualifications in the use of:

• Autism Diagnostic Interview (Revised)
• Autism Diagnostic Observation Schedule-2
• Diagnostic Interview for Social and Communication Disorders (DISCO)
• Developmental, dimensional and diagnostic interview (3Di)

1984-6 Structural family therapy (Institute of Family Therapy)

2006 Solution focused brief therapy

2008 Accreditation as TEACCH trainer

2008 Cognitive Behavioural Therapy

2010 SCERTS (3 day advanced course)

Health and Care Professions Council number: PYL22795

Enhanced DBS number: 001688257335

Career History

1975-77 Special needs teacher

1979-1986 Educational Psychologist, Northamptonshire County Council

1986-1990 Educational Psychologist. Leicestershire County Council

1990-1991 Psychologist, North York Board of Education, Toronto, Canada

1991-1995 Specialist Educational Psychologist, Leicestershire County Council

1995-2004 Specialist Senior Educational Psychologist (Autism), Leicestershire CC

2004-2012 Specialist Senior Educational Psychologist (Autism), Northamptonshire CC

2012-present Independent Educational Psychologist

Achievements and responsibilities

• Continuing responsibility during my 30 year career for assessing the needs of children and young people with complex needs and providing advice and support, both directly to young people and to the adults living and working with them. This includes a 4 year period working as a member of a child guidance team delivering family therapy.
• Provision of case focused consultation and specialist assessment to the staff of specialist settings for pupils with autistic spectrum difficulties (ASD), Educational Psychologist colleagues and members of Leicestershire’s and Northamptonshire’s outreach teams. In the course of this work I have appeared in over a dozen tribunals.
• Jointly responsible for the development of Leicestershire’s Autism Outreach Team, the first Local Authority team to provide support to children with autistic spectrum children in mainstream settings and their families, which became the model for similar services in many other LAs.
• Developed and managed Leicestershire’s pre-school intervention service for youngsters with ASD, becoming the first Local Authority to deliver the National Autistic Society’s EarlyBird programme for parents and participating in the national evaluation study
• Member of the team piloting the first trials of National Autistic Society’s Accreditation Programme in Local Authority contexts.
• Member of the British Psychological Society working group on ASD
• Carried out the first ever application and evaluation of the use of Circle of Friends with youngsters with ASD, leading to this becoming a standard approach to supporting pupils with ASD in mainstream settings
• Conducted review of ASD provision in Northamptonshire and produced strategic plan which was the basis for the development of County’s services and provision over 5 years. Involvement, alongside advisers and school improvement partners, in monitoring provision in mainstream and special schools.
• Established and chaired Northamptonshire’s Autism Coordinating Group, comprised of representatives of parent’s groups and all professions providing services to parents and children. The group reported directly to the Child Adolescent and Mental Health Partnership Board and was responsible for maintaining oversight of provision across the county and establishing multi-disciplinary working groups to address specific issues.
• Established and chaired the multi-disciplinary group responsible for producing and implementing Northamptonshire’s assessment and diagnostic pathway. I was also responsible for monitoring the operation of the pathway.
• Developed and delivered a range of training packages for parents and professionals. In addition to providing training in Leicestershire and Northamptonshire, I have also frequently delivered training to parents and professionals at courses and conferences throughout the United Kingdom and in Ireland and Mauritius. I have also been involved in the development of courses at the University of Birmingham and the University of Northampton and have delivered training at both.
• Author and co-author of a number of articles, chapters and books, including one book which has also been published in the USA and two books which have been translated into several language

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 Publishiss.

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

Challenging behaviour and ASD: making sense of the problem (2013) In M.Howley & D.Preece Supporting Pupils with Autism Spectrum Disorders London: Optimus

Understanding the perspectives of children and parents: a foundation for developing partnership (2013) In M.Howley & D.Preece Supporting Pupils with Autism Spectrum Disorders London: Optimus