Autism Spectrum Disorder Diagnostic Pathway Information
Your child has been placed on this pathway because information from their referral suggests they may have features of autism.
You will see the terms Autism Spectrum Condition (ASC), Autism Spectrum Disorder (ASD) and autistic being used. These words all describe the same specific patterns of strengths and difficulties.
ASC affects the way your child sees the world around them, including how they communicate, manage relationships and learn. It is a lifelong condition. Autism is described as a spectrum because every person with autism is different, and therefore will require different levels of support. Assessment for ASC will take time and that timeframe will depend on your child’s presentation.
During the assessment process, we might ask to see you without your child. This is to gather more information, which may be difficult to discuss in front your child.
Even though your child is being placed on the ASD Diagnostic Pathway we will still consider all possible causes for your child’s difficulties and not solely focus on Autism.
The pathway is for assessment and possible diagnosis, we do not provide any therapeutic support.
Assessment for ASC is multi professional. This means that information from different professionals is needed so we can understand your child’s development and needs. This allows a decision to be made about whether your child has ASC.
The members of this team will depend on your child’s needs, but may include:
- A Neurodevelopmental Paediatrician (also known as a Community Paediatrician)
- An Advanced Clinical Specialist Speech and Language Therapist
- A Specialist Neurodevelopmental Nurse (also known as a Community Paediatric Nurse)
- ASC Pathway Navigators
Neurodevelopmental Paediatricians are children’s Doctors who specialise in childhood development and are trained to carry out autism assessments.
During your appointment with the Neurodevelopmental Paediatrician a history will be taken from you and your child. They will ask questions about you and your family, your child’s health, and specific questions about their development. It is important that a detailed history is taken to build a full picture of your child’s health and needs. Your child may also be examined by the Neurodevelopmental Paediatrician.
During the appointment you will be able to ask questions and tell the Neurodevelopmental Paediatrician about any concerns you may have. Please feel free to bring along another adult to the appointment with you if you wish to discuss concerns with the Doctor without your child present. This appointment will usually take between 60 and 90 minutes.
Advanced Clinical Speech and Language Therapists (SpALT) are highly trained to carry out autism assessments. They will ask questions about your child’s social communication and interaction skills. Difficulties with speech and language is common in young people with a diagnosis of ASC.
They may already have a report from the Neurodevelopmental Paediatrician/Specialist Nurse however, sometimes they may need to go through some background information with you.
During the appointment your child will be asked to carry out a range of activities with the SpALT. These activities are to look at certain skills and will provide a good overview of your child’s social communication and interaction skills, including their strengths and difficulties. Depending on your child’s age, you may be asked to wait outside the room whilst the assessment takes place.
After the Assessment has been completed, the SpALT will provide you with some feedback from the session and discuss any concerns you may have. You will be given time to ask any questions.
Neurodevelopmental Specialist Nurses are Nurses who are highly skilled in working with young people and their families. They are trained to carry out autism assessments and work alongside the Neurodevelopmental Paediatricians.
The Neurodevelopmental Specialist Nurse will complete a detailed history with you, which will include gathering information about early development, family and social history, social communication and interaction, education, behaviour, sensory issues, and specialist interests. This will help to identify your child’s strengths and difficulties.
We realise this may be a lot for you to remember and talk about. It may be helpful for you to think about the above points and make notes prior to the appointment. You will be able to tell the Neurodevelopmental Specialist Nurse about any concerns and ask any questions you may have. This appointment will usually last between 60 and 90 minutes.
ASC Pathway Navigators manage the patients journey throughout the ASC Pathway. They are the first point of contact for families and professionals. You can contact them with any queries via: Telephone: 01270 278290 E-mail: ASCadmin@mcht.nhs.uk
Once the required assessments have been carried out all the information we have gathered will be reviewed. A decision will then be made by the multi professional team about whether your child has ASC. Sometimes this may mean that you will be asked to attend a feedback session.
If your child is diagnosed with Autism, you will be given information on how to access both national and local post diagnostic support. We do not offer a follow up service for ASC. Your child will therefore be discharged from the ASC pathway.
Demand avoidance is a common response to anxiety in children and young people, whether they have a diagnosis of ASC or not.
PDA is a term used to describe the complex and extreme behaviours, where a child or young person shows extreme resistance to everyday activities. This is not common.
PDA is not a recognised diagnosis and there is no formal criteria to diagnose it. This is not therefore a term we will use to describe your child’s difficulties. We do, however, know there are children and young people who have complex and extreme demand avoidant behaviours that may not respond to types of behavioural support that are useful for ASC.
If your child is diagnosed with ASC and has significant difficulties in this area, we would describe them as having “ASC with complex demand avoidant behaviours”. This will help you, school and other professionals supporting your child/family to understand which strategies may be of use.
Whilst we don’t diagnose PDA, we do recommend the PDA Society website for useful resources to support children with complex demand avoidant behaviour.
Cheshire East Local Offer
The local offer is a list of services and activities for children and young people aged 0-25 years and their families.
- Includes information about the support and provision that families can expect from a wide range of agencies for children and young people with Special Educational Needs or Disability (SEND)
- Is set out in one place so families and professionals have access to the same information
- Describes available support and services within Cheshire East, along with provision outside of Cheshire East that families may also be able to access
- Has been co-produced with families and professionals from a wide variety of agencies across the Cheshire East area
Cheshire Autism Practical Support (CHAPS)
Provides information, advice, signposting and practical support to children and their families. This service works to improve autism awareness, increase independence skills, and use early intervention techniques to help improve outcomes. They run several training workshops and activities for parents/carers and children including:
- Autism awareness
- Challenging behaviour
- Sensory processing difficulties
- Mindfulness
- Lego Therapy
- Play Therapy
Website: www.cheshireautism.org.uk
Autism Inclusive
Provides information and advice to families and children in a safe, non-judgemental environment, a place where you can seek support, community, and friendship. They offer an extensive programme of events and activities such as:
- Gaming
- Family fun
- Parent/carer support sessions
- Workshops
- Sensory spaces
- Arts and crafts
- Guest speakers
Website: www.aicrewe.org.uk
Ruby’s Fund
Ruby’s Fund is a charity supporting children and young people with special educational needs and disabilities. They are based at their sensory centre in Macclesfield which has a soft play area, sensory rooms, a social café, sibling rooms and a therapy room. They offer family support and wellbeing services for parents, carers, children and their siblings in a safe non-judgemental environment. Website: www.rubysfund.co.uk
Carers Trust – Making Carers Count
This organisation offers support for any child with additional needs, such as benefits support, emotional support, information and training, confidence building, careers information and carers awareness training. E-mail: parentcarersupport@cheshireandwarringtoncarers.org Call: 0300 102 0008. Text: 07593782615
Cheshire East Information Advice and Support (CEIAS)
This service acts to empower you as a parent/carer by giving you the information and support you need to ensure your child receives an education relevant to their SEND. They help you to work positively with your child’s educational setting, local authority staff and professionals to ensure your child’s needs are met.
- Signpost you to relevant laws and guidance
- Signpost you to the formal process the local authority follows to see if your child may need an Education, Health and Care Needs Assessment
- Help you go through and understand, official documents relating to your child’s SEND
- Signpost you to advice on what to do if you do not agree with decisions regarding your child’s special needs or disability
- Deliver workshops on a range of topics/themes for parents and carers around SEND
To use this service a parent must think their child has special educational needs or disability, but you do not need a professional to agree or to have a diagnosis. Website: www.ceias.cheshireeast.gov.uk
Live Well Cheshire East
Live well Cheshire East is an online resource where you can find useful information and a range of advice and support on a range of subjects, plus an easy-to-use directory of services, support, and activities. Website: www.livewellchehireeast.gov.uk
The Cheshire West and Chester Local Offer
The local offer is a listing of services and activities for children and young people aged 0-25 years and their families.
- Includes information about the support and provision that families can expect from a wide range of agencies for children and young people with Special Educational Needs and/or Disabilities
- Is set out in one place so families and professionals have access to the same information
- Describes available support and services within Cheshire East, along with provision outside of Cheshire East that families may also be able to access
- Has been co-produced with families and professionals from a wide variety of agencies across the Cheshire East area To access the local offer visit www.livewell.cheshirewestandchester.gov.uk/Categories/3948
Cheshire Autism Practical Support (CHAPS)
Provides information, advice, signposting and practical support to children and their families. This service works to improve autism awareness, increase independence skills, and use early intervention techniques to help improve outcomes. They run several training workshops and activities for parents/carers and children including:
- Autism awareness
- Challenging behaviour
- Sensory processing difficulties
- Mindfulness
- Lego Therapy
- Play Therapy
Website: www.cheshireautism.org.uk
Autism Inclusive
Provides information and advice to families and children in a safe, non-judgemental environment, a place where you can seek support, community, and friendship. They offer an extensive programme of events and activities such as:
- Gaming
- Family fun
- Parent/carer support sessions
- Workshops
- Sensory spaces
- Arts and crafts
- Guest speakers
Website: www.aicrewe.org.uk
Ruby’s Fund
Ruby’s Fund is a charity supporting children and young people with special educational needs and disabilities. They are based at their sensory centre in Macclesfield which has a soft play area, sensory rooms, a social café, sibling rooms and a therapy room.They offer family support and wellbeing services for parents, carers, children and their siblings in a safe non-judgemental environment. Website: www.rubysfund.co.uk
Carers Trust – Making Carers Count
This organisation offers support for any child with additional needs, such as benefits support, emotional support, information and training, confidence building, careers information and carers awareness training. Website: parentcarersupport@cheshireandwarringtoncarers.org Call: 0300 102 0008. Text: 07593782615
Live Well Cheshire West
Live well Cheshire East is an online resource where you can find useful information and a range of advice and support on a range of subjects, plus an easy-to-use directory of services, support, and activities. Website: www.livewell.cheshirewestandchester.gov.uk/
Autism
National Autistic Society
The National Autistic society has lots of information about ASC. It can be used by young people, families, and schools. They can also offer access to training. Website: www.autism.org.uk
NHS Autism Guide
The National Health Service (NHS) website has useful information that can help if someone you care about has or may have Autism. Website: www.nhs.uk/conditions/autism/
Mental Health and General Wellbeing
Young Minds
Young Minds offer practical advice and tips on supporting your child - from how to encourage your child to open up about their feelings, to dealing with mental health services. They also have a parent’s helpline and can provide advice and support if you are worried about your child. Website: www.youngminds.org.uk
Kooth
Offers free, safe, and anonymous online support for young people. Website: www.kooth.com
Moodjuice
Designed to help you think about emotional problems and work towards solving them. Website: www.moodjuice.scot.nhs.uk
MindED
Advice and information to help families to understand what mental health problems can occur and what they can do. Website: www.mindedforfamilies.org.uk/young-people
Anxiety UK
Provides support and help for those suffering with heightened levels of anxiety. Website: www.anxietyuk.org.uk
The Children's Bowel and Bladder Charity
Provises information on sensory needs and toileting. Website: The Children's Bowel and Bladder Charity
