You and your child may refer yourselves to our team, or you may be referred by your consultant Paediatrician, Psychologist, Psychiatrist or Educator. For self-referral, you can email our practice management on practicemanager@neurodiversitycentre.co.za, with a brief outline of the reason for referral, your child's name and age (if it is for a child), and which of our centres you would prefer to attend (Durbanville, Paarl, Worcester or Somerset West). Professionals who wish to refer can also email us directly, or make use of our referral form, available here .

The most suitable clinician will then be allocated to your care, and one of our Practice Administrators will contact you to set up a first appointment. Once a first appointment has been confirmed, we will send you some paperwork to complete prior to the first appointment. After the first appointment, the clinician will be able to advise and discuss with you what further assessments may be required, and can also give you some indication of the various pathways to intervention that may apply.

If you have any questions or concerns, please do not hesitate to contact practicemanager@neurodiversitycentre.co.za, or you can phone our office closest to you.

Assessment at the NDC is intended to be as comprehensive as possible, and is grounded in the unique needs of each client. Assessment may well be required across many developmental facets and settings; and may require both formal and informal assessments, in the home, the school (or creche) and the Centre. Diagnostic and psychometric assessment are just two facets of the assessment process. In order to most appropriately attend to each individual's needs, cases may be reviewed in the MDT meetings, and a key-working professional will be assigned whose role will be to guide your (or your child`s) engagement with services. Importantly, assessment needs may change and evolve over time – as an individual's diagnostic presentations may change over time.

What are screening forms used for?
Screening forms assist us to have as much information as possible about you or your child when we meet, and also enables you to inform us about all of your concerns in as much detail as possible.:

• The ESSENCE-Q assesses whether a child (at any age, but particularly very young) may have difficulties that would fall under the ESSENCE 'umbrella'.
• The Relationship Problems Questionnaire (RPQ) screens for any concerns in the child’s emotional attachments and means of relating to others.
• The Strengths and Difficulties Questionnaire (SDQ) screens children and adolescents in the five dimensions of: emotional problems, conduct problems, hyperactivity or inattention, peer-based social difficulties and prosocial behaviour.
• The A-TAC (Autism-Tics, ADHD and other comorbidities) allows for proxy identification of conditions such as the autisms, ADHD, DCD and similar. It is not a diagnostic tool, however.
• Where necessary, a clinician may choose to use an additional screening tool, such as the Extreme Demand Avoidance Questionnaire (EDA-Q), Social Communication Observation Template(SCOT) and others.

Why are school and/or home observations conducted?
Being able to observe your child in both a peer and school setting gives us extremely valuable information about the quality of your child's social engagement, and about his/her progress in many other developmental areas - ranging from speech and language development, motor and coordination development, and the ability to flexibly tolerate all of the varied demands of the classroom, amongst others. Similarly, at home we are able to observe your child in her/his most familiar setting, where he or she is most comfortable. Here we are able to learn about how your child engages her/himself in what she or he likes (and is most comfortable and content) to do. We also learn about how your child experiences her/his environment.

Do we use specialist instruments to assist in diagnostic assessments?
There are no specific diagnostic tests that 'diagnose' neurodevelopmental and neuropsychiatric conditions such as conditions on the Autism spectrum. There are, however, specialist instruments that help a clinician in the process of making a clinical diagnosis. This is important, as a comprehensive diagnostic assessment does take time. Collateral from other clinicians, the school / creche and similar should be collected and considered. Other assessments, considering the child's sensory processing, developmental coordination, cognitive areas of strength and weakness, self-care and emotional and behavioural needs may also be required. Some of the instruments that we at the NDC utilise and are trained in using, include the following:

• DISCO (our flagship assessment framework)
• ADOS
• ADI-R
• 3Di
• Griffiths

As the DISCO is the primary and flagship assessment framework for NDC clinicians, our organization is committed long-term to supporting the development of this framework in the manner intended by Dr Gould and the John and Lorna Wing Trust.

While precise diagnosis of your or your child's needs is important, it is also useful to remember that the identification or diagnosis of one area of neurodevelopmental need may prove inadequate – or it may not reflect the reality that many children with neurodevelopmental ‘needs’ or ‘differences’ experience challenges in several areas that overlap and affect/interact with, one another. In this way, re-assessment of additional concerns may be required. Similarly, children’s neurodevelopmental ‘differences’ and needs may evolve and change over time, and therefore ongoing review and re-consideration is a useful and responsible way of continuing to understand each child or individual’s way of being in the world. The important factor is that for some 'diagnoses' there are clear and very well proven intervention programmes, such as for Developmental Coordination Disorder. In the context of other diagnoses, such as for many of the autisms, intervention should be naturalistically-based, individuallytailored and environmentally focussed, supporting the individual's skills-acquisition and experience of the world, and capacitating the individuals who work around the child. Understanding the child or individual’s experience of the world is key – as is ensuring that we attempt to understand and attend to all of the needs of each family member.

It may also be the influence of multiple additional (ESSENCE) conditions or concerns that are most impacting one’s developmental progress or quality of life. A core factor in the success of interventions is the extent to which the family, school and team can work together around the child or individual. Interventions may be multi-faceted and the intervention needs may change and evolve over time - or when the developmental or environmental needs of the individual change. Each of the neurodevelopmental and neuropsychiatric needs may require individualised and appropriate attention. It is extremely important for us to work closely with parents and familymembers: the experts around their own child. What sets the NDC apart is integrated, multi-disciplinary engagement with our clients to ensure that all areas of need are addressed. This is achieved through key-working, whereby the therapist best suited for each case is assigned to guide and facilitate this multi-faceted therapeutic journey.

Psychoeducation and Parent Guidance
In the case of most ESSENCE conditions or neurodevelopmental problems, a practical, empathic understanding of the child or individual's needs - and their experience of the world - is key. An example of this is understanding for example that a child with a condition on the spectrum of Autism has inherent qualitative impairments in the social aspects of communication, interaction and imagination, and associated inflexible patterns of thought – as well as challenges in tolerating and managing change in his or her immediate environment. If a supporting teacher, facilitator or parent is able to understand these needs more effectively (and how they are absolutely unique to each child), they become more equipped to support the child or individual. Your NDC keyworker will plan with you where the most appropriate psychoeducation and parent guidance is required. Your NDC keyworker will also need to work with you and relevant school staff to remove barriers to classroom inclusion, and make adaptations that consider your child's learning style and needs. Empathically understanding how your child experiences their ‘world’ – including how she or he experiences you as parent(s) is an extremely important facet to reducing the associated and secondary challenges that your child may face.

Psychological Therapy
At the NDC we provide a variety of appropriate therapies, consistent with available international best practice, which should ideally be consistent with the unique needs of each client. Importantly, each developmental transition (such as puberty) brings unique challenges for individuals with ESSENCE needs. Interventions include, among others, social skills development individually or in groups, environmental intervention, cognitive-behavioural therapy, psychoeducation and emotional support. It is imperative that therapy is planned with a primary mindfulness of the child or individual's needs at that point in time. Various therapies are one facet of intervention, and may well not be suitable or appropriate in all cases. This should be discussed in detail with your keyworker. There may often also be 'interactions' between the various therapies or interventions, such as changing school or medication, or attempting a particularly challenging aspect of a social training programme. This must be carefully considered, so that the most effective decision-making around therapy can take place.

Support and Intervention Groups
A flagship programme is the Bridges in Social Understanding. This is an online-based social skills programme which may be accessed individually, but which we will also be offering in facilitated groups at certain schools and at the NDC. We will also be running goal-directed support groups for certain groups in our communities, varying from groups for adult women with conditions on the spectrum of Autism, to groups for parents of children with Pathological / Extreme Demand Avoidance (PDA/EDA). Information on these groups is updated regularly on our Facebook page and on our website throughout the year. If you have specific needs that you believe should be attended to in a group setting, please do let us know. We rely heavily on the input of our families.

Most recent research is clear as to the implications of any child presenting with any form of speech and language delay or difficulty at the age of two and a half. Many of these children may later present with one or other form of neurodevelopmental challenge. The onus is therefore on comprehensive assessment and support across all developmental areas, with appropriate early identification as soon as possible.

In the context of describing the interwoven nature of neurodevelopmental symptoms and needs as they present in children, Professor Christopher Gillberg formally coined the acronym ESSENCE in 2010. ESSENCE refers to Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations; and is a term that continues to garner widespread support and use throughout the world. As described on the website of the Gillberg Neuropsychiatry Centre (GNC), the term ESSENCE refers to the whole group of neurodevelopmental / neuropsychiatric disorders that present with impairing symptoms in early childhood. This term was originally ‘coined’ by Professor Gillberg to refer to the reality of children (and their parents) presenting in clinical settings with impairing symptoms before age 3 (to 5) years of age in the fields or domains of (a) general development, (b) communication and language, (c) social inter-relatedness, (d) motor coordination, (e) attention, (f) activity, (g) behaviour, (h) mood, and/or (i) sleep. From a ‘diagnosis’ or ‘classification’ perspective, these would include diagnoses such as AD(H)D, Autism Spectrum Disorders, Developmental Coordination Disorder, Intellectual Developmental Disorder, Specific Language Impairment, Tourette syndrome, early-onset bipolar disorder, behavioural phenotype syndromes (such as FAS), Reactive Attachment problems and a variety of neurological and seizure disorders presenting with major behavioural/cognitive problems at an early age.

A primary factor that cannot be discounted in considering these diagnoses, is the fact that their symptoms are often overlapping or interwoven, and may be difficult to distinguish from one another in initial diagnostic assessments. This is precisely because they often present in similar ways - with similar symptoms, and share genes and environmental risk factors. In this way, symptoms of each disorder can overlap with those of another disorder within the group and diagnostic criteria may be met for one or two of them at one age, and for a third or fourth of them at another age.

This term 'ESSENCE' that the NDC have adopted is not a diagnosis, rather it is a means of thinking about the broad and varied ways in which early-onset neurodevelopmental challenges present. As demonstrated in other contexts by Gillberg and his collaborators, ESSENCE challenges affect approximately one in ten individuals. In our context the NDC team is committed towards providing a high-quality neurodevelopmental service for individuals with ESSENCE needs, and to collaborate as broadly and extensively as possible with the families in our services.

Across our NDC offices we offer support and intervention groups.

We run goal-directed support groups for our clients, including:

• Women on the Autism Spectrum
• Men on the Autism Spectrum
• Teenage Girls on the Autism Spectrum
• Teenage Boys on the Autism Spectrum
• Parents of Children with Extreme Demand Avoidance
• Adults living with Extreme Demand Avoidance

Please click here to visit our support groups information form. This form also provides you with an option to register. For more information regarding which groups are currently running, please email mary@neurodiversitycentre.co.za. If you have specific needs that you believe should be attended to in a group setting, please do let us know. We rely heavily on the input we receive from our families. As a client of the NDC, you will also receive our monthly newsletter keeping you up to date with which groups are active, and which new groups are starting.

A flagship programme is Bridges in Social Understanding. This is an online-based social skills development programme which may be accessed individually, but which we will also be offering in facilitated groups at certain schools and at the NDC. This programme offers a profoundly-detailed and comprehensively accessible social thinking curriculum that allows for long-term social understanding development: an essential and primary need for most of our individuals with autism conditions.

Research at the NDC
Ben Truter, Clinical Director, is a research fellow at the Ukwanda Centre for Rural Health at Stellenbosch University, and is also a registered PhD candidate at the Gillberg Neuropsychiatry Centre, based in the Department of Neuroscience and Physiology at the Sahlgrenska Academy of Gothenburg University in Sweden. In collaboration with Associate Professor Amy Slogrove at Ukwanda, and under the supervision of Professors Eva Billstedt and Christopher Gillberg, as well as Dr Lucy Thompson (from the GNC and Glasgow University), his research seeks to establish a community-based sustainable screening regime (for neurodevelopmental problems in very young children), a validated neurodevelopmental screening tool that can be rapidly used by Community health workers; and to generate population-level prevalence rates for different neurodevelopmental conditions (such as ASD) in the Breede Valley under-resourced communities. It is envisaged that additional research projects will be tied into this programme of study. Ben Truter also co-supervises research by several Psychology and Medical Epidemiology students.

Jacques Nel is the NDC’s research co-ordinator and is conducting a validation study for the use of the Autism-Tics, ADHD and Other Comorbidities (A-TAC) inventory for use in South African, tertiary clinical settings. This study is being conducted through the NDC, in collaboration with Stellenbosch University, and with the approval of the SU Health Research Ethics Committee. Ben Truter co-supervises this study.

The NDC, in collaboration with the Neurodiversity Foundation, is seeking to initiate a research registry for voluntary clinical data to be used towards better understanding neurodevelopmental and neuropsychiatric conditions as they present in the South African context, with regards to both tertiary clinical and public healthcare cases.

Associates and partners of the NDC:

• Gillberg Neuropsychiatry Centre (GNC) - The NDC is in the process of being established as a South African research hub for the GNC of Sahlgrenska Academy, Sweden. This will tie NDC research into the GNC-hosted, international Gothenburg Autism Project (GAP) which is at the forefront of research in ASD and associated neurodevelopmental conditions. The GNC and GAP initiative is headed by Professor Christopher Gillberg, the most published figure globally in the field of child neuropsychiatric development, and proponent of concepts such as ‘ESSENCE’ and ‘Autism-Plus’ that the NDC in turn uses. It is intended that Professor Gillberg and his colleagues continue to guide all of the research activity of the NDC,
• The National Autism Society (UK) and Lorna Wing Centre – We are proud informal associates of the Lorna Wing Centre for Autism, UK, co-established and consulted by Dr Judith Gould, who is responsible for the co-creation of DISCO diagnostic tool and for bringing this framework for understanding and assessing for the ‘Autisms’ to South Africa. Dr Gould’s DISCO Framework and the Lorna Wing Centre’s guidance on clinical practice has served as an inspiration for the founding of the NDC. Furthermore, Dr Gould is a patron of the Neurodiversity Foundation, the public-outreach ‘sister’ organization of the NDC. Dr Gould has enabled Ben Truter to train professionals in the use of the DISCO in Southern Africa. The Lorna Wing Centre is associated with the National Autistic Society of the UK, from which we derive the SPELL framework used at the NDC to guide all support and intervention. Dr Gould is also considered one of the most eminent world-leading authorities on the Autisms. Lorna Wing and Judith Gould’s pioneering work in the 1970s on the epidemiology of autism and related conditions, led to the concept of a spectrum of autistic conditions, and we hope to continue drawing on her guidance.
• AIMS Global – The organisation provides holistic therapeutic guidance and supervision for intervention in childhood autism on an international basis – supporting families with the implementation of home-based, day to day solutions for supporting, capacitating and understanding their child: and developing his/her skills. The work of AIMS has allowed families to remotely access the supports and assistance that they require.
• Bridges to Social Understanding – As noted elsewhere on this site, the NDC considers this to be the foremost social skills development curriculum program for individuals with conditions on the spectrum of Autism. In the latter half of 2020 and in 2021, a primary focus is for the NDC to make available and more accessible information regarding this programme and how it works to our families and the broader NDC community.
• Calabash online hosting platform for healthcare professionals
• Autism Resources South Africa
• Faces of Felicity

The Neurodiversity Foundation
Since laying the groundwork for the NDC, it has been our dream to establish a not-for-profit organisation to allow us to provide the same quality of early childhood intervention services to the majority children and families (who do not have access to private healthcare) with neuropsychiatric, educational and capacity-building This birthed the community-outreach arm of the NDC, the Neurodiversity Foundation. The Foundation’s initial focus is centred in the Breede Valley of the Western Cape, with its board-members comprising Dr Alitha Pithey, Dr Henriette Saunders, Ben Truter and Executive Director Petra Conradie. Dr Judith Gould and Dr Bernard Fanaroff are patrons to the Foundation. The Foundation seeks to redress the gross historical injustices in service access and to build sustainable, community-based, long-term resources of support within these communities. The Foundation will further serve as the base for research into setting up effective and comprehensive screening programs, validation of screening tools, and the generation of data on neurodevelopmental conditions, which is still sorely lacking in South Africa.

At the Neurodiversity Centre we are available to assist you (and/or the school your child attends) in finding a ‘helping hand' best matched for your child and family’s needs. This may be in the form of a facilitator, tutor, au pair or even respite support.

Facilitator:
Facilitators are sometimes required to attend school with your child and give your child extra support in the classroom. The role is not to teach, but to facilitate the child's inclusion, comprehension, involvement and capacity (as well as learning) in academic and social domains. This can be for a short period or your child may need this assistance for an extended period.

Tutor:
A tutor serves primarily as teaching support for a child. This may take place as additional tutoring within/outside of school hours. A tutor may also be the primary teacher within a home school environment. Importantly, the learning process does not only pertain to academic learning and skills, but often may also refer to many other domains of skills-acquisition – for example in social understanding or conventions of peer-based interaction.

Au pair:
An au pair's primary role is the care and supervision of a child. They may assist with homework, meals, extracurricular activities, social interactions, etc.

Our NDC key-working psychologists assist families in recruiting and placing a facilitator/tutor/au pair. We also ensure adequate training and continued support for everyone involved. Please contact referrals@neurodiversitycentre.co.za for more information on fees and services.

Helpful and interesting articles or suggested readings:

• Autism Awareness Centre Inc (2017).
  https://autismawarenesscentre.com/the-low-arousal-approach-at-home/
• Gillberg, C., Fernell, E., & Minnis, H. (2013). Early symptomatic syndromes eliciting neurodevelopmentalclinical examination.
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3886270/
• Hadjikhani, N. (2014). Scientifically deconstructing some of the myths surrounding autism.
  https://pdfs.semanticscholar.org/40f5/071630ef2ed4c46ead01d1f400fd4a3e5229.pdf
• Jane Jarvis and Debbie de Jong (2009). The manual that never came with your child.
• Livingston, L.A., Shah, P., Milner, V., & Happe’, F. (2020). Quantifying compensation strategies in adults with and without diagnosed autism.
  https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0308-y
• National Autistic Society (2020). SPELL.
  https://www.autism.org.uk/about/strategies/spell.aspx
• Syson, Z. & Langton, E.G. PosiƟve PDA: Simple strategies for supporƟng children with pathological demand avoidance at School.
  https://www.pdasociety.org.uk/wp-content/uploads/2020/01/Positive-PDA-booklet.pdf
• Vermeulen, P. (2012). AuƟsm as context blindness. AAPC Publishing
• https://www.autism.org.uk
• https://www.pdasociety.org.uk
• A scoping introduction to the autisms
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7398158/

Video links:

• Attention Regulation: The Difference Between ADHD and Autism (Explaining the Neurodiversity Rainbow).
  https://www.youtube.com/watch?v=xQc5Feyl2GE&feature=youtu.be
• A short introduction to Extreme / Pathological Demand Avoidance.
  https://www.facebook.com/neurodiversitycentre/videos/638357606751516
• A discussion on EDA/PDA.
  https://www.facebook.com/HarryThompsonPDAExtraordinaire/videos/334797244375822
• Bridges in Social Understanding Course.
  https://drive.google.com/file/d/1gbdVMUdnqSpOFMxizuwz3mhzOKQi9PYo/view?usp=sharing
• A wonderful animation to raise understanding and acceptance of autism. via Amazing Things Happen
  https://fb.watch/3zqO0LyX5v/

This list of links will be updated regularly, so please check back in.