YOUnited Neurodevelopmental Help for Families

Waiting lists for assessments are very long across the country, but you don’t need to wait for a diagnosis to start helping your child. If you think they might need further support at school you should contact your child’s teacher and/SENCO or your GP.

You do not need a diagnosis to apply for an EHCP and organisations like SENDIASS offer free, independent advice in Cambridgeshire - Cambridgeshire Online | SEND Information, Advice and Support Service (SENDIASS)

 

Post Diagnostic Support

1. Families can access this Post Autism Spectrum Disorder Diagnosis Workshop.
2. Cambridge Community Paediatrics host an excellent series of websites entitiled: After assessment of ASD
3. Families can access www.teachmeaboutautism.com for useful resources about autism.
4. Healthy living advice: https://bedslutonchildrenshealth.nhs.uk/neurodiversity-support/a-whole-person-approach/.
5. Visual resources are also available at https://do2learn.com, including a social skills toolkit. 
6. The National Autistic Society at www.autism.org.uk offers support and information for individuals diagnosed with autism and their families.
7. School may wish to seek advice from the Peterborough City Council Autism and ADHD Specialist Advisory Teacher Team. A parent/carer consultation service operates via a pre-booked appointment by telephoning 01733 863689.
8. You can contact the SEND Information Advice and Support Service (SENDIASS) for support around education matters email sendiass@peterborough.gov.uk.

 

Additional resources

1. Family or school can access the Peterborough City Council Autism and ADHD Advisory Teaching Service for additional advice and support. A parent/carer consultation service operates via a pre-booked appointment by telephoning 01733 863689.
2. The National Autistic Society (NAS) have also produced a video called “Amazing things can happen” to help explain autism and autistic peoples’ experiences - https://youtu.be/RbwRrVw-CRo.
3. The Autistic Young Experts is a YouTube channel where autistic young people talk about their experiences of being autistic - https://www.youtube.com/@autisticyoungexperts7988.
4. The SEND Information Advice and Support Service (SENDIASS) ) can offer support around education matters via email - sendiass@peterborough.gov.uk or confidential helpline open during term times: Call Peterborough on 0300 365 1020.
5. You can access further information about neurodiversity - https://bedslutonchildrenshealth.nhs.uk/neurodiversity-support/a-whole-person-approach/.
6. SOS SEN is a service that provides a range of information, advice, and support for parents in relation to the process of accessing support for children with additional needs – https://sossen.org.uk/.
7. The family may wish to consider applying for DLA (disability living allowance) and the Family Fund - https://www.familyfund.org.uk/.
8. Romsey Mill’s Aspire delivers youth clubs and support for autistic children and young people. Their clubs aim to reduce social isolation and improve the mental well-being of those who attend. They currently support young people through local clubs and 1:1 support. Further information can be found at - https://www.romseymill.org/aspire. To access Romsey Mill’s Aspire a child needs to: have a formal autism diagnosis; be on roll at a mainstream school, and in year 5 or above (up to age 18); and live in Cambridge city, South Cambridgeshire, or Peterborough city. If you would like more information or are looking to refer an autistic child or young person to these services, please contact the Romsey Mill Aspire team on admin@romseymill.org or call the Romsey Mill office on 01223 213162.
9. The Teen Sleep Hub offers advice and resources around sleep for teens and their parents, including videos, eBooks, and other downloads. They can be accessed online at: https://teensleephub.org.uk/.
10. Embrace Child Victims of Crime provide practical support and face-to-face, telephone, and online emotional support and counselling in schools to children who’ve witnessed or been victims of crime, including domestic violence, neglect and abuse - https://embracecvoc.org.uk/.

 

Useful books and further reading for the young person and family:

Primary age

1. Fiona Bleach, “Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism”
2. Sienna Castellon, “The Spectrum Girl’s Survival Guide: How to Grow up Awesome and Autistic”
3. Jennifer Elder, “Different Like Me: My Book of Autism Heroes”
4. Gemma Geir, “The Abilities in me: Autism” (3 years and up)
5. Carol Gray, “My social stories book”
6. Kathy Hoopman, “All Cats Are on the Autism Spectrum: An affirming introduction to autism” (3 years and up)
7. Penny Kershaw, “The ASD Workbook: Understanding Your Autism Spectrum Disorder” (10 years and up)
8. Mark Scarborough, “Angus the Angry Gremlin”
9. Robyn Steward, “The Autism-Friendly Guide to Periods” (10 years and up)
10. Elizabeth Verdick & Elizabeth Reeve, “The Survival Guide for Kids with Autism Spectrum Disorder (and Their Parents) (Survival Guides for Kids)”

 

Secondary age

1. Carolyn Brock, “I’m a teenager get me out of here: A survival guide for teenage siblings of young people with autism”
2. Mark Haddon, “The curious incident of the dog in the night-time”
3. Luke Jackson, “Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence”

 

 

Pre Diagnostic Support

There are very long wait times nationally for neurodevelopmental assessments. 

Whilst waiting, please take a look at the information and resources below. Further advice regarding sensory issues, communication and behaviour is available on the  Cambridge Community Services website.

Nationally, there is a very high demand for CAMHS neurodevelopmental services and within CPFT CAMHS, we  have long waiting lists  for diagnostic assessments for both ADHD and ASD. 

We sincerely apologise for the extended wait times and understand the frustration, anxiety, and distress that this may cause. We would like to reassure you that we are working hard to address the increased demand on the neurodevelopmental service.

If you or your child/young person requires support whist waiting for an appointment with us, this can be offered through other CAMHS Teams or outside agencies. You do not need to wait for your child's assessment in order to access mental health support.

 

Waiting Well from The Owl Centre Charity is an online, holistic initiative designed to support individuals on neurodiversity waiting lists across the UK.

 

Autism Understood (AU) is a website about autism, for autistic young people. 

The website was created by Spectrum Gaming, a registered charity. Spectrum Gaming is a community for autistic young people which has three main intended outcomes:

1. Building friendships: AU want to create a community where autistic young people feel comfortable and can make strong friendships in a safe way. Their main provision is their online community, that anyone from across the UK can access.
2. Increasing Self-Acceptance: They want to make sure as many autistic people as possible are able to accept their differences and live the happiest lives they can.
3. Advocacy: They aim to create a movement that will have a positive influence on society through advocacy, and enable strategic change to ensure the needs of autistic young people are met across the UK. 

 

Ormiston Families Stronger Together is for families who have children with additional needs or disabilities and is free of charge. Early years settings such as childminders, pre-schools, nurseries and primary schools can also register to support the children in their care with additional needs or disabilities. Stronger Together operates within Fenland (Cambridgeshire).

 

SENDIASS stands for Special Educational Needs and Disabilities Information Advice and Support Service. It’s a free, impartial, and confidential service offering information to young people with special educational needs and disabilities (SEND) and to their parents and carers.

 

Spectrum is passionate about the work they do with families and carers of children with Autism, additional needs and disabilities. They provide that support in many ways. Their charity provides ongoing support for children from birth to 18 years of age- families do not need an ‘official’ diagnosis to access their resources; they just need to be registered with them. The membership is free.

 

Learn Together is a resource for schools and other education settings. The purpose of this is to define for Early Years settings, Schools, and Further Education providers in Cambridgeshire what provision should be (ordinarily) available for children and young people with SEND.

 

Ordinarily Available Provision can be defined as the provision made for children whose special educational needs can be met from the resources generally available to the school or setting. This will apply to all children without an Education Health and Care Plan (EHCP), but children with an EHCP will also benefit from this type of provision in addition to the provision written in their plan.

 

Romsey Mill Aspire delivers youth clubs and support, in and around Cambridge, for autistic children and young people. Their clubs reduce social isolation and improve the lives and mental well-being of those who attend.

 

Pinpoint is not only run for parents, but also by parents.

They give help and information to parent carers of children and young people aged 0-25 with SEND (Special Educational Needs and Disabilities) and/or additional needs, as well as give parent carers opportunities to have a say and get involved in improving local services.

No formal diagnosis is required in order to access support from Pinpoint, for example, a child may be on a waiting list, accessing services, had a referral turned down, or just be struggling.

Pinpoint is grateful to have worked with their champions, parent/carers, professionals and partners across health, education and social care to produce the Supporting Your Neurodiverse Child digital booklet. The booklet is packed full of useful information for families wherever they are on their journey with neurodiversity.

 

Cambridgeshire Community Services are paediatricians working in the Cambridgeshire community. We can help your family to best understand your child's medical needs. Together we can reach a conclusion that best describes your child's challenges and strengths to enable your family as well as health, education and social care services to best understand and support your child's needs. We are only able to see children in a clinic setting who meet our referral criteria.

 

Little Miracles provide a non-judgemental environment where they use their holistic approach to support the needs of the whole family. They specialise in providing advice, guidance, support, activities, training and safe places to any family that has a child with an additional need, disability or life-limiting condition. This includes providing support before they are diagnosed and from birth to 25.

 

Family Voice are a local registered charity who are actively seeking to improve services in all areas of the lives of children and young people with disabilities or additional needs. They are here for Parents and Carers of children and young people aged 0—25 years with a disability or additional needs.

They aim to work together with professionals and parents so that the services for their children and young people meet their needs. Putting parent carers and their children at the centre and helping them to be heard.