Children and Young People's Autism Service

Please note: Referrals into the service can only be made by a professional who has met with the child and family.

All referrals will be triaged by an NHS practitioner.

Find the referral form here: Children and Young People’s Autism Service referral form (.doc). Please complete the form and forward to autism.referrals@mpft.nhs.uk.

If an assessment is appropriate, the young person will receive a face-to-face assessment to help the practitioner understand the current difficulties.

Once the team has completed their assessment, they will talk through the options available, so that together we can plan and agree the best support.

Should a referral not be deemed to be appropriate, practitioners may contact referrers for more information or will signpost the family/young person to other services.

Teacher Liaison form

Find the form here: Children and Young People's Autism Service Teacher Liaison form (.doc)

NB: Teacher Liaison forms can only be accepted when completed by a school or other health professional. When sending your completed form to the team, please ensure it is password protected.

Kellee Ward

Role: Team Leader

Kellee joined the team in May 2024 and has a background of leadership and operational management both external and internal to the NHS. Kellee has been in the NHS since March 2020 and has worked across various trusts, the most recent being Community Paediatrics at The Royal Wolverhampton. Within this role, Kellee worked with various services, local authorities and service users to develop and improve services offered to children and young people. Kellee is looking forward to using her previous experience to work with the team and improve autism services for children, young people, and their families across Staffordshire.

Dr Sandra Eades

Role: Consultant Psychiatrist

Dr Eades is a qualified medical doctor who decided to specialise in mental health and has worked in Child Psychiatry for the last 24 years – 20 of them in her current post. Dr Eades works with children and young people with a variety of mental health issues. She is currently providing sessions into the Autism Service and works closely with the team and meets with them regularly.

Vicki Lloyd

Role: Clinical Psychologist

Vicki completed a PhD in Psychology before undertaking Clinical Psychology doctorate training and qualifying in 2005. Vicki has worked with children and families across NHS, local authority and independent sectors and has specialist interest in working with individuals with Autism, Learning Disabilities, Looked after Children and those with attachment difficulties or developmental trauma. Vicki has worked in children and young people’s autism services since 2016 and within the service she specialises in the assessment and diagnosis of autism.

Jay McFarlane

Role: Clinical Psychologist

After completing his Clinical Psychology Doctorate, Jay has been predominantly employed in child mental health services. Jay has previously worked in CAMHS, youth offending services, ADHD, and autism services. Jay works in a cognitive and systemic manner. He has had years of experience working with complex cases. At MPFT, his work involves assessment, intervention, supervision, and consultancy.

Penny Tunnicliffe

Role: Clinical Psychologist

Penny is a Clinical Psychologist who has experience of working across Child and Adolescent Mental Health (CAMHS), Child Development, and Learning Disability services. Penny has particular clinical and research interests in neurodevelopmental conditions (e.g. Autism, Intellectual Disability, ADHD), mental health and challenging behaviour. Penny has experience of leading clinical projects in community and inpatient settings which have aimed to improve outcomes for children and young people with Autism.

Dr Cheryl Watkins

Role: Counselling Psychologist

Cheryl is a counselling psychologist in the team and has worked within the Children and Young People's Autism Service since 2012, specialising in Autism Assessment and Interventions. She has also worked in the Youth Justice Services in Staffordshire and secure inpatient facilities. Cheryl has a background in providing therapeutic intervention with adults, children and young people and families exposed to trauma. Cheryl continues to offer specific specialist intervention and is trained in a number of therapeutic models.

Jivone Bhandal

Role: ASC Practitioner

Jivone has experience working with children, adolescents and adults who have mental health difficulties. She has extensive experience working with a range of difficulties such as autism, anxiety, depression, phobias, obsessive compulsive disorder, stress, anger and relational issues.

She conducts autism assessments and provides interventions to families. Jivone likes to work in an integrative way drawing upon various therapeutic models to help young people and families. She likes to be transparent in her work and offers a non-judgemental, confidential space where she likes to build a rapport with her client base.

Stephanie Lowe-Hodgkins

Role: ASC Practitioner

Steph, a qualified teacher, assessor and trainer has over 25 years’ experience in NHS, education, social care and voluntary sector across the midlands. She is experienced in offering information, advice and guidance to families, professionals and CYP to remove barriers and challenges, empowering them, offering strategies and interventions to enable progress. She has an extensive knowledge, understanding and passion for empowering individuals with an ASC, managing behaviours that challenge, SEND, development and the education pathway.

Sam Micklewright

Role: ASC Nurse Practitioner

Sam qualified as a Registered Children’s Nurse in 2007, initially working in acute paediatrics in Sandwell and West Birmingham. She made the transition to community nursing in 2009, caring for children and families across Stoke on Trent and North Staffordshire. Nursing children in their own homes with acute illness, complex needs and providing end of life care. More recently working as an asthma specialist nurse before moving over to Mental Health services in 2021.

Sam delivers both clinical assessments and offers interventions within the team, while utilising her knowledge and experience to provide education to professionals and families.  Sam is passionate about making a difference and has a keen interest in SEND and inclusion, working collaboratively with families and professionals as SEND champion for this service and a SEND school governor in a parenting capacity. She strives to ensure that parents are empowered and supported to enable children and young people to thrive and achieve their potential.

Tina Boswell

Role: ASC Nurse Practitioner

A paediatric nurse for over 20 years, Tina trained at Great Ormond Street Hospital before qualifying and joining Birmingham Children's Hospital's Renal and Urology team as a staff nurse. Tina formed part of a specialist nursing team that provided highly technical treatment, education, and support to children and their families who were living with chronic and end stage renal failure. In 2018 Tina took up a role as a Roald Dahl clinical nurse specialist within the rare disease team at Birmingham Children's hospital. Tina was responsible for supporting children and families, with complex needs, helping them to co-ordinate their care, providing practical, and emotional support, one of only a few specialist nurses in this area, based in the UK. Tina is passionate about holistically caring for children, young people and their families, and ensuring they access the support they need to live happy, healthy lives.

Jon Hodgkins

Role: Clinical Nurse Specialist

Jon has spent a number of years working with young people within inpatient services who have autism, and will be a vital part of supporting the team and families with assessments and a range of interventions.

Janice Harrison

Role: Occupational Therapist

Janice qualified as an Occupational Therapist (OT) in 1982 and has worked in a number of OT roles, including with children and young adults. In her role, Janice will carry out full occupational therapy assessments, which will also include understanding the child’s sensory processing needs and the impact on their daily life. From this, goals will be developed alongside recommendations to improve and support their home and school life, as well as within their community.

Rebecca Borhara

Role: Senior Speech and Language Therapist

Rebecca qualified as a Speech and Language Therapist in 2007 and has since completed a Post Graduate degree in Language and Communication Impairment in Children while developing a specialism in Autism Spectrum Condition and Developmental Language Disorders. She has worked with children, young people and adults across the NHS, within the justice system and independent sectors. Rebecca has been part of the team since February 2020 and specialises in the assessment and diagnosis of ASC and associated communication difficulties.

Vicky Harvey

Role: Specialist Speech and Language Therapist

Vicky qualified in 2009 in Birmingham and is passionate about promoting and improving the lives of children and young people with communication problems. She has extensive experience working within the NHS, education and independent sectors with young people with neurodevelopmental conditions, learning and physical disabilities as well as social emotional and mental health issues. Vicky joined the team in September 2022 and is excited to be working to support and develop local NHS services.

Vandana Grainger

Role: Therapy Assistant Practitioner

Vandana is an Occupational Therapy (OT) Apprentice in her final year of University and joined the Children and Young People's Autism Service (CYPAS) in 2020. She has over ten years of experience working in the NHS mental health services, ranging from inpatient to community settings. Vandana has experience of delivering one to one and group interventions completing OT functional assessments, supporting with creating individualised OT care plans / goals to support engagement in meaningful activities to build confidence and develop / maintain independent living skills in different environments. Vandana is qualified in low-intensity cognitive behavioural therapy, however her primary focus is OT as this is the area which she is most passionate about.

Hannah Moore

Role: Assistant Psychologist

Hannah joined the CYP Autism Service as an Assistant Psychologist in January 2023. Hannah has previously worked in the NHS as a Laboratory Assistant before working as a Recovery Support Worker with young people and adults experiencing mental health difficulties in a residential recovery unit. Hannah is passionate about working with children and young people with autism and hopes to apply her previously gained knowledge and skills to her new role.

Caitlin Adams

Role: Assistant Psychologist

Caitlin joined the team in April 2023 as an Assistant Psychologist. Caitlin graduated from the University of Winchester in 2019 with a 2:1 degree in Psychology, followed by a Masters Degree in Cognitive Neuroscience, graduating with Distinction. Before joining our team, Caitlin was an Assistant Psychologist within the Community Learning Disability team in South Staffordshire, offering intervention and assessment to people with a Learning Disability. Caitlin has experience of delivering music workshops to children in both mainstream and specialist education schools, using instrument and voice to express feelings and encourage teamwork. Caitlin was also a complex care support worker for adults with mental health difficulties, Autism or Learning Disabilities, and has a breadth of experience with behaviours of concern. Caitlin is involved in completing school observations, triage, cognitive assessments and intervention.

Amie Drew

Role: Assistant Psychologist

Amie joined the team in April 2023 and is passionate about working with young people and their families. Amie has previous experience working in mental health services, ranging from working in CAMHS to working with older adults as a mental health support worker. Amie will be involved in helping with autism assessments, including completing observations and cognitive assessments as well as delivering intervention.

Abigale Ashford

Role: Team Secretary

Abi commenced her role in October 2020. She has over seven years of admin experience within the NHS and hopes to use her skills to give patients and families the best service and care alongside the Autism team.

Jayne Saunders

Role: Administrative Assistant

Jayne is part of a team of administrator’s who help with general enquiries from families and other services. She is also heavily involved in the day to day tasks such as,, booking appointments, updating clinical systems and sending out reports and letter’s. Jayne joined the service in 2022 and is enjoying being part of a very caring and professional service.

Liz Carruthers

Role: Administration Assistant

Liz has been with the Autism team since August 2022 and her main tasks are keeping the referrals and teacher liaison forms up to date. Liz has over 40 years’ experience of working in the public sector.

Tracy Lawford

Role: Administration

Tracy joined MPFT late 2021 as admin for Children's immunisation, doing bank admin for covid immunisation clinics and also attending a few clinics as front of house.  Tracy started with CYP Autism Service in March 2023 working for 2 days a week answering the phones and adding referrals onto the system. Tracy worked as a travel agent for almost 40 years and has many transferable skills which really benefit the team.

Abbey Boss

Role: Team Lead Assistant

Abbey is currently assisting the admin team with general enquiries and administration tasks. Abbey has over seven years’ experience of working within the admin field.

• National Autistic Society (NAS)

• Autism West Midlands

• North Staffs Asperger/Autism Association (NSAAA)

• National Institute for Health and Care Excellence (NICE) - Assessment and diagnosis of autism: what to expect

• What is Autism - A Workbook for Young People (pdf)

• Introduction to Autism Parent Pack (pdf)

• Advice on Bladder and Bowel Problems in Children and Young People (bbuk.org.uk)

• Potty and toilet training for children with additional needs and disabilities (PDF)

Books

• Jennifer Cook O’Toole - The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome

• Jennifer Cook O’Toole - Sisterhood of the Spectrum: An Asperger Chick’s Guide to Life (Book for Girls with High Functioning Autism)

• Kathy Hoopman - All Cats have Aspergers

• Matt Friedman - Dude I’m an Aspie – Kids Edition

Videos

• Asperger’s in Girls (conference talk led by Psychologist Tony Attwood)

• Good Mental Health for Autistic Girls and Women (conference talk led by Psychologist Tony Attwood)

The team have arranged the following interactive online workshops for families to take part in from their homes.

• Places are limited for these sessions, so you are therefore recommended to email the team at autismtoolbox@mpft.nhs.uk to book your place as soon as possible, thank you.
• These sessions will be hosted using Microsoft Teams. Once you have emailed us to book your place, you will be sent a web link to access the appropriate session. NB: You do not need to have Microsoft Teams installed on your computer to join this meeting. Click ‘watch on the web instead’ to view via your web browser.
• We ask that anyone who has booked onto a session at any of our workshops and is unable to attend to contact the service to let us know so we can offer your place to another family.
• All places are confirmed via the eventbrite booking system and a link will be sent to you.

The 'Autism Toolbox' is our holistic package of support for parents and carers in South Staffordshire whose child or young person has recently received a diagnosis of autism and a programme of support sessions for families who only require advice and strategies for specific areas of need to support their child or young person at home on a day-to-day basis.

The team strongly recommends that families in receipt of a recent diagnosis attend all 10 sessions. For other families who only require specific areas of support, there are places reserved for ad hoc attendance depending on need.

We would ask that families confirm places as soon as possible and as these are limited, we would kindly ask that should you not be able to attend a session you have booked, then you inform the team to enable other families who are awaiting support to have the opportunity to attend.

Workshop Cohorts for 2023

There are four cohorts running throughout the year. All workshops will be from 9:30 am to 12.30 pm. Please contact the team for precise weekly content.

• Cohort 1, 31 January to 25 April
• Cohort 2, 5 May to 14 July
• Cohort 3, 19 July to 20 September
• Cohort 4, 26 September to 28 November

Workshop Details

Please note, the order of each week's content may be subject to change.

Week 1: Introduction

The first week’s session is a general introduction to our service and what makes up the autism diagnosis (the triad of impairment). There will be the opportunity to discuss your current concerns and questions so that the course moving forward can be specifically tailored to the needs of the people attending.

Week 2: Communication (Part 1)

This session is aimed at looking into the first two areas of the triad of impairment – communication and interaction. We will discuss how aspects of communication can be difficult and how the experience of someone with autism may differ in terms of their communication needs.

Week 3: Communication (Part 2)

This session will continue with any questions or concerns from the previous week, but there will additionally be more of a focus on strategies that can be put in place in the home to support with the difficulties discussed.

Week 4: Rigidity

This sessions discusses the third area of the triad, which is the rigid and repetitive behaviour/ thinking that can sometimes be seen in people with autism. We will be looking at coping with change, how to introduce new ideas and ultimately look at how we can help our children be a little more comfortable outside their comfort zone.

Week 5: Sleep

This session focusses on one of the most common and underrated difficulties seem in autism. Sleep affects everything from general functioning to anxiety, and if the sleep isn’t good it has a knock on effect on everything else. During this session we will be talking about sleep hygiene and strategies to use at home to work towards a better sleep routine that should hopefully have a positive impact on other areas of life.

Week 6: Sensory workshop (Part 1)

These two sessions are aimed at discussing sensation and how we interpret the world around us; what makes us feel comfortable and uncomfortable with regard to our senses, what this experience is like for people with autism, and of course discussing strategies to support with these difficulties.

Week 7: Sensory workshop (Part 2)

These two sessions are aimed at discussing sensation and how we interpret the world around us; what makes us feel comfortable and uncomfortable with regard to our senses, what this experience is like for people with autism, and of course discussing strategies to support with these difficulties.

Week 8: Managing behaviours that challenge

We are all capable of displaying behaviours that challenges others and 100% of the time there is a reason behind this behaviour. In this session we aim to address the behaviour that you experience, that you find challenging and help support you to manage the behaviours you are seeing at home. This can be anything from aggression, to saying please and thank you. This group recognises that both you and your child have your own needs and goals – it is not about compromise, it is about finding the behaviours that get everyone’s needs met in the quickest easiest way.

Week 9: Anxiety

Anxiety and stress is one of the most highly sought after groups in our service and one of the most frequent concerns we see. We are happy to provide this group for parents to explain what anxiety is, where it comes from, why we have it, and most of all how to manage it. In this session we hope to address some of the concerns you have regarding your child’s anxieties and how to support them manage this better through practice of tried and tested strategies.

Week 10: Skills consolidation and Q&A

The final week of the course is split into two. The first part is to follow up on resources provided in the previous behaviour programme and address any further concerns. The second part is to check in on families, what you have found useful, any additional information you would like to know and the opportunity for some closing discussions with the families and staff you have been working with throughout the course.

The current situation is generating a lot of anxiety and the Trust is doing all it can to provide support.

MPFT has set up a 24/7 urgent NHS mental health service providing telephone support, advice and triage. 

The number to call for people living in South Staffordshire is 0808 196 3002.

Office hours

• Children and Young People’s Autism Service by telephone: 0300 303 0691 (09:00 to 17:00, Monday to Friday)
• Staffordshire Children's Advice and Support Service by telephone: 0300 111 8007 (08:30 to 17:00, Monday to Friday)

Out of hours (evenings, weekends or bank holidays)

• Staffordshire Children's Advice and Support Service: 0345 604 2886

In the event of a medical emergency please go straight to A&E.

If you wish to be added to the distribution list for these updates please email communications@mpft.nhs.uk with the subject line ‘Children and Young People’s Autism Service update’.

The service update is issued monthly - check the Trust’s Facebook page or this service web page for the latest news.

Children and Young People's Autism Service Newsletter - Winter 2024

Children and Young People's Autism Service Newsletter - Autumn 2024

Children and Young People Autism Service Update - April 2024

Children and Young People Autism Service Update - December 2023

Children and Young People Autism Service Update - June 2023

Children and Young People Autism Service Update - April 2023

Children and Young People Autism Service Update - February 2023

Children and Young People Autism Service Update - January 2023

Who works in the service?

The service consists of a range of professionals including psychologists and psychology assistants, speech and language therapists, nurses, occupational therapists, psychiatrists. You can meet the team on the Children and Young People’s Autism Service web page via the MPFT website.

Where is service based?

The service has an administrative hub at:

• Anglesey House, Wheelhouse Road, Rugeley, WS15 1UL

Appointments with the service will be at a range of local community venues including:

• The Bridge, St George's Parkway, off Crooked Bridge Road, Stafford, ST16 3WT
• Cross Street Clinic, Cross Street, Burton-on-Trent, DE14 1EG
• Argyle Street, Tamworth, B77 3EN
• West Chadsmoor Clinic, Clarion Way, Cannock, WS11 4NJ

We also use other local bases and venues, depending on where referrals are from.

I was receiving care from the previous provider – will you have my records?

The current service transferred to MPFT in October 2019. All records were transferred to the service by the previous provider for all children and young people including all closed cases. Records were also transferred for children and young people who had been given a ‘working diagnosis’ in the 18 months before transfer.

If your child or young person received care from the previous provider and did not fall into the category above MPFT will request the records from the previous provider.

How do people refer into this service?

We accept referrals for assessment by any professional who has met with the child and family. We welcome referrals from schools or other settings, as through our experience schools and educational providers know young people well. There is no need for schools or other professionals to ask the young person’s GP to make a referral into us. Our referral form can be found by clicking Self-referral form - Children and Young People’s Autism Service - MPFT. Please complete the form and forward to autism.referrals@mpft.nhs.uk

We would ask schools to also complete a ‘Teacher Liaison Form’ available via Teacher Liaison Form - Children and Young People’s Autism Service - MPFT. Completion of this will significantly streamline the assessment process and reduce delays in obtaining this from schools. Should schools need advice on completing the School Liaison form the please contact the office on 0300 303 0691 and we will be happy to provide advice.

All referrals will be triaged by members of our multi-disciplinary team.

Should an assessment not be deemed to be appropriate, practitioners may contact referrers for more information or will signpost the family/young person to other services.

If your young person has a diagnosis (or a working diagnosis from the previous provider) we accept self-referral for support and intervention by contacting the service by:

• Calling 0300 303 0691 between the hours of 9am-5pm, Monday to Friday (excluding Bank Holidays)
• Emailing cypautismservice@mpft.nhs.uk

What happens when I am referred for assessment?

Before the assessment, with your permission, we will seek additional information about your child’s current strengths and difficulties at nursery, school or college. We will collect this information by asking the school’s Special Educational Needs Coordinator (SENCo) or class teacher to fill in a semi structured questionnaire. It is helpful if you can let them know that we are going to contact them to request this information.

Once we have received this information you will be offered an initial appointment; this is usually by telephone or video consultation. This first appointment is with parents/carers and a professional to get a good understanding of your child or young person’s development.  We use a structured tool called the ADI-R. This is an in-depth interview and can take up to two hours.

The parent and the specialist will go over the child’s medical history (and earlier assessments made), how they behave in general, key developmental milestones your child has passed, and any speech and language concerns.

The questions explore the child’s behaviour patterns in three key areas. These are the areas most affected by ASD:

• Social interactions - How does the child engage with the people in their life? For example, do they make eye contact? Do they smile and use facial expressions to communicate? Do they seem interested in playing with other children? And do they engage in imaginary play with their peers.
• Communication & language - Is the child trying to communicate? If your child is non-verbal, do they attempt to communicate in other ways such as gestures, eye gaze, pointing or leading by the hand? If your child is verbal, are there any concerns you may have around speech and language
• Restrictive and repetitive patterns of behaviour. Do they have repetitive rituals?

Following this assessment, the majority of young people will be offered a face-to-face play-based assessment called ADOS (Autism Diagnostic Observation Schedule), to look at their current profile of strengths and difficulties. The ADOS is a standardised assessment that allows us to look for social and communication behaviours that are typical of autism spectrum conditions. It consists of age-appropriate games, books, imaginary play or activities and conversation with one clinician. We hope this experience will be enjoyable and not feel like a ‘test’. At the end of the ADOS, observations are summed in pre-arranged categories.  With children over the age of about five, it is better for family members not to be present during the ADOS, as we find the child often looks to the parent for answers to questions. The ADOS can take up to one hour to complete.

Additional information such as assessments from other professionals and school reports may also be beneficial. The team have a pathway in place for children and young people under 5 who are well known to community paediatrics to prevent any duplication of assessment. There are also pathways in place with community speech and language therapy; however, do bring along anything you think may be useful to share with us.

My child has not been seen by the service before but has been diagnosed by another provider, but I feel that they now need support – how do I access the service?

Parents/carers can complete a self-referral form by clicking Self-referral form - Children and Young People’s Autism Service - MPFT and email it to cypautismservice@mpft.nhs.uk

If your child has been assessed prior to October 2019 please send us proof of a full or working diagnosis and this will be reviewed by our multi disciplinary team (MDT) to ensure the diagnosis is NICE & MDT compliant. The service also has a duty worker available to discuss urgent concerns by telephone on 0300 303 0691 (9am-5pm, Monday to Friday) regarding your child.

How long will I have to wait to be seen?

It is currently taking between 24 to 30 months to complete an autism assessment. This is due to the high number of referrals, staffing challenges and a backlog of young people to be seen. We are continuing to work on ways to significantly reduce this timescale. We are working with a range of external providers to support with assessments and will contact families with the longest wait to offer to transfer to those providers. All families will be contacted for their first appointment via telephone or letter as soon as an appointment becomes available.

As a service we understand your needs are urgent and we aim to address these as soon as possible as part of our intervention pathway.

What if I have an urgent need and need to contact you for advice or support?

If you need urgent help from the service between the hours of 9am-5pm from Monday to Friday (excluding bank holidays) you can call 0300 303 0691 and speak to the duty worker.

You can also contact the Staffordshire Children's Advice and Support Service (0300 111 8007, 08:30 to 17:00 Monday to Friday, and 0345 604 2886 out of hours)

For urgent mental health crisis out of hours MPFT do provide a help line on 0808 196 3002

In the event of a medical emergency please go straight to A&E.

What is the access number for the Children & Young People’s Autism Service?

• The telephone number is 0300 303 0691
• The email address is cypautismservice@mpft.nhs.uk

The team will be available between 9am-5pm, Monday to Friday (excluding bank holidays).

How can I access records from the service?

Parents can also make a Subject Access Request (SAR) more details on how to access your records can be found via Your Rights - MPFT.

What is the position on additional diagnoses such as pathological demand avoidance (PDA), sensory processing disorder (SPD), dyspraxia, attention deficit hyperactivity disorder (ADHD) etc.?

Pathological Demand Avoidance (PDA)

Pathological demand avoidance (PDA) was a term first used by Professor Elizabeth Newson in the 1980s, to describe the profile of a group of children she had seen for assessment. PDA first appeared in a journal article in 2003: Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders - British Medical Journal. Elizabeth Newson described PDA as sitting under the umbrella of pervasive developmental disorder. The diagnostic criteria for autism are continually reviewed and developed. Currently the categories of pervasive developmental disorders are now being replaced by autism spectrum conditions: Autism spectrum conditions in under 19s: recognition, referral and diagnosis - NICE.

Pathological demand avoidance (PDA) is increasingly, but not universally, accepted as a profile that is seen in some autistic people. The term extreme demand avoidance emerged as an alternative term to pathological demand avoidance (pathological demand avoidance: exploring the behavioural profile - PubMed.gov) as some feel extreme is a more acceptable term than pathological.

The existence of PDA as a ‘diagnostic term’ and how it fits within the autism spectrum is widely debated. With limited evidence-based research there is no conclusive and agreed upon definition of PDA. What is generally agreed upon is what is often referred to as a PDA profile. People with a PDA profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidance is often (but according to some PDA adults, not always) accompanied by high levels of anxiety.

As PDA is not a formally recognised diagnostic category in the Diagnostic and Statistical Manual of Mental Disorders (DSM V), our team would not make a formal diagnosis; however if demand avoidance is a key feature of your child’s profile we would make it known in any reports and support you in putting in place suitable management strategies.

For more information please see Pathological Demand Avoidance (PDA) - National Autistic Society.

Sensory processing disorder (SPD)

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioural responses. ‘Sensory Processing Disorder’, is not a diagnosis that is currently recognised in the Diagnostic and Statistical Manual of Mental Disorders (DSM V), however that is not to say your child may not have sensory processing difficulties.  Many children with an autism spectrum condition will have sensory processing difficulties associated with their diagnosis.  These children might be too sensitive to certain sensations such as loud noises, smells, the feel of their clothes or another person’s touch. They might actively try to avoid these sensations through certain behaviours.

Some children are not sensitive enough to certain sensations such as food around their mouth, movement and body position. They might actively seek sensations through behaviours such as chewing non-food items, fidgeting or being generally on the go.

Sensory processing can be very variable from one day to the next and from one child to another.

We know that children with high levels of anxiety tend to display a higher level of sensory sensitivity; i.e. more sensitive to sensations such as noise, touch, smells and tastes. We also know that children who are struggling to communicate and express their emotions or needs sometimes use sensory behaviours to gain attention. It is important to consider both of these things in the context of sensory processing difficulties and address them alongside the sensory behaviours.

Ayres Sensory Integration Therapy/Intervention (ASI) is a form of therapy which aims to change the child’s underlying neural pathways and remedy the child’s impairment in sensory processing. We do not offer ASI as it is not an approach that is recommended by the Royal College of Occupational Therapy or NICE guidelines for Autism. However, we follow the Royal College of OT guidelines to focus on helping an individual to manage not change their sensory differences.

When a child/young person is referred to occupational therapy as part of the ASC service an occupational therapy assessment will be carried out using a range of assessments which could include sensory processing assessments if the practitioner felt it was appropriate.

If it is identified that sensory difficulties are impacting a child/ young person’s level of functioning, appropriate recommendations and care planning will reflect any sensory strategies alongside other occupational therapy recommendations/ interventions.

More information about sensory difficulties is available via Sensory differences - National Autistic Society.

Dyspraxia

Developmental co-ordination disorder (DCD), also known as dyspraxia, is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age and appear to move clumsily.

Dyspraxia is thought to be caused by the way that the brain processes information, which results in messages not being properly or fully transmitted. It affects the planning of what to do and how to do it, and is associated with problems of perception, language and thought. Dyspraxia sometimes runs in families.

While it is distinct from autism spectrum conditions many parents notice similar symptoms, including sensory processing issues. In some cases, the two conditions can co-occur. As with autism, people with dyspraxia may be over- or under-sensitive to certain sensory stimuli. MPFT has a pathway for dyspraxia in our Community Paediatrics service, including an OT/Physio joint clinic. If the CYP autism team think it appropriate a referral to support to this service will be made.

Attention deficit hyperactivity disorder (ADHD)

ADHD is common in people with autism. If someone has ADHD, they have significant difficulties with things like poor attention, over-activity and impulsiveness. MPFT are currently reviewing the pathway for diagnosis and intervention for children with ADHD. We hope to move towards a more integrated neuro-developmental offer. This is subject to service redesign and further discussions with the CCG. If the CYP autism team think it appropriate a referral can be made to paediatrics or CAMHS depending on criteria.  However, we would recommend for children or young people that have received a recent diagnosis, we would recommend gaining a greater understanding of their autism and implementing strategies before considering further assessment for ADHD.

More information is available via Related conditions - a guide for all audiences - National Autistic Society.

What is the service provision for ARFID (Avoidant Restrictive Food Intake Disorder)

We have been commissioned by the CCGs to provide an autism assessment and intervention service. The specification and requirements for a specialist feeding support or ARFID (Avoidance Restrictive Food Intake Disorder) are different.  MPFT, however, have recently received some investment to expand the scope of the Eating Disorders Service to provide support to CYP with ARFID.  This service is being mobilised in late 2021/early 2022 (as we recruit to new workforce). There will be close working relationships between the CYP Autism Service and the Eating Disorders Team, as well as community dietetics to ensure appropriate support to young people with feeding difficulties. More information about ARFID can be found via ARFID - Beat Eating Disorders.

What is the service provision for young people with a ‘working diagnosis’?

MPFTs South Staffordshire Children and Young People’s Autism Service has been working hard to ensure it operates in line with the National Institute for Health and Care Excellence (NICE) guidance.  This guidance is based on the best available evidence, and a key part of which is ensuring that assessments the service undertakes are discussed by a multi-disciplinary team prior to a diagnosis being given. The service has not been and will not be providing a working diagnosis to children or young people as this is not in line with NICE guidance. 

Children assessed by the MPFT service will be able to access intervention once they have a full diagnosis of autism. In those instances where a ‘working diagnosis’ is provided from other organisations, unfortunately this is not classed as a full diagnosis and we cannot offer intervention.  We appreciate that this is confusing to some families and wish to minimise the impact of this situation. As such, if a ‘working diagnosis’ was provided up to October 2019 then you can still access the MPFT service for advice and intervention if required. If a ‘working diagnosis’ has been provided by another organisation since October 2019 then we apologise that we cannot accept this request for intervention and we advise that you contact your assessor or request a referral to our autism service where an assessment can be made if applicable.

Given the volumes of young people who transferred to us in October 2019 with a working diagnosis, unfortunately, we currently do not have commissioned capacity to review all young people who were given a working diagnosis as well as assess those without a current diagnosis and provide intervention. As a working diagnosis facilitates access to Autism Outreach and our ASC team the risk of not reviewing these diagnoses is considered to be lower risk than not providing assessment to those without a diagnosis or diverting support from providing intervention to those with a need.  We continue to work with the CCG to develop a strategy for this cohort of young people.

• Emergency - 999
• Samaritans - 01952 256161 (local call rates) or 01953 116123 (free)
• Mind - 07434 869 248
• ChildLine - 0800 1111
• NSPCC - 0808 800 5000
• NHS (non-emergency) - 111
• Sexual Health Service - 0300 123 0994
• FRANK - 0800 776 600
• Staffordshire Connects - Special Educational Needs and Disabilities (SEND) Local Offer