Support after a diagnosis of Autism or ADHD
It is normal to feel mixed emotions after your child has been diagnosed. You are not alone and there is support available for you and your child. It may be helpful to access some of the resources below.
Support for Parents and Carers
Kids Autism Hub: The Kids Autism Hub has been co-produced by professionals and Autistic young people and their families. Including live webinars providing advice and support following your Autism diagnosis. This is for parents/carers of children of all ages, however young people over the age of 12 can also register for their own account. This is for families receiving support in Essex and Thurrock only.
You can make a self-referral to access the hub using this link
Please enter: ChildrensautismADHDassessment@nullnelft.nhs.uk and enter either the name of your clinician (this can be found on your appointment letter) or ‘Autism and ADHD Assessment Pathway’ as the clinicians name if it asks for this information.
Local Offer: A Local Offer gives children and young people in the borough, who have Special Educational Needs (SEN) and/or a disability, information in one place. The Local Offer aims to provide clear, comprehensive and accessible information about what services and provisions that are available for parents/carers and young people.
Supporting your Neurodivergent child: This booklet has been created by parents, for parents. It has been designed by Essex Family Forum alongside local charities, NHS and Social Care organisations.
SNAP Charity: SNAP is a local charity who provide support for families of children with differences and disabilities.
MYOTAS (My Own Time and Space): MYOTAS is a local charity who provide support to neurodivergent children and their families.
Families in Focus: A parent-led charity supporting families who have children or young people in their family with Special Educational Needs and/or Disability. They offer support to young people up to the age of 25.
Essex Family Forum: The parent/carer forum in Essex for families whose children and young people, up to the age of 25, who have special educational needs or disabilities.
National Autistic Society: A national charity providing support and information for Autistic People and their families.
ADHD Foundation: The ADHD foundation provides health and education services for people with ADHD and other neurodivergent conditions.
Autistic Girls Network: An organisation that works to support, educate, advocate and bring change for Autistic girls, women and gender diverse people.
Financial Support: You may be entitled to apply for financial support to help pay for additional equipment or activities your child may require to help them thrive. Visit the website for more information.
Ambitious about Autism: A charitable organisation dedicated to supporting Autistic people and their families.
Support for Young People
Spectrum Gaming: An online platform where young people can connect with others and develop friendships in a safe space with the support of autistic adults.
Autistic Girls Network: Support and education, for Autistic girls, women and gender diverse people.
Teen Sleep Hub: Advice, support and strategies to support teenagers who are experiencing sleep difficulties.
MYOTAS (My Own Time and Space): A charity supporting neurodivergent children and their families. They provide groups for children and young people including Woodland Warriors, Mindful Crafts and Yoga.
Autistic F.C: An inclusive football team based in Brentwood
Young Minds: A webpage dedicated to provided support to young people with their mental health.
Support for Young People in Education
School SENCO (Special Educational Needs Coordinator)
If your child needs more support at school, please speak to the school’s. A child does not require a diagnosis in order to receive support in school.
Essex SENDIASS: Provides free, confidential and impartial information, advice and support about Special Educational Needs and Disability (SEND) for children and young people (0-25) and their parents/carers living in Essex.
IPSEA: Helping children and young people with special educational needs and disabilities (SEND) get the education they are entitled to by law
Autism Education Trust: Resources promoting good autism practice and support to professionals working with autistic children & young people.
SEND Advice and Guidance: Resources for schools to support implementing strategies in the classroom as well as a specific ‘Sensory Awareness’ Tool Kit to support the implementation of sensory strategies in the classroom
School Attendance and Mental Wellbeing: Anna Freud provides advice and support for children’s mental health and wellbeing. This resource is around school and attendance and mental wellbeing.
Therapeutic Advice and Support
Sensory Processing
We have 8 senses touch, taste, smell, hearing, vision, proprioception (movement), vestibular (balance) and interoception (internal senses). Some neurodivergent children can experience differences with how they process and interpret sensory information.
You can access the ‘Sensory Awareness Tool Kit’ which explains sensory processing, and strategies that can be implemented at school. ‘Making sense of my senses’ helps you and your child’s school to help your child.
Emotional Regulation
A ‘meltdown’ is often an external expression that could include shouting, crying, hitting out, and a ‘shutdown’ may look like complete withdrawal. When a person is experiencing a meltdown or shutdown it is important to keep them safe and let them know you are there for them.
This video offers ideas and strategies to support your understanding of emotional regulation. – https://youtu.be/PmMoRR-SBMw
Further resources for emotional regulation include:
Autism Level Up! – www.autismlevelup.com/
Ambitious about Autism – www.ambitiousaboutautism.org.uk/understanding-autism/behaviour/meltdowns-and-shutdowns
Autistic Girls Network – https://autisticgirlsnetwork.org/meltdowns-shutdowns-and-burnout/
Anxiety
Anxiety is a feeling that some people will experience at some point in their life.
This video offers ideas and strategies to support your understanding of emotional regulation – https://youtu.be/7qq4T11apVE
Further resources for Anxiety include:
Autistica: Anxiety and Autism – www.autistica.org.uk/what-is-autism/anxiety-and-autism
National Autistic Society: Anxiety in Autistic people – www.autism.org.uk/advice-and-guidance/professional-practice/anxiety-autism
Autistic Girls Network: Autism and Anxiety with Dr. Luke Beardon (video) – https://youtu.be/vueAASgTz8s
Sleep
Some neurodivergent children find settling and staying asleep difficult. This video provides advice and support around sleep strategies – https://youtu.be/fEyrB3lKjSk
Support your child’s sleep – https://cerebra.org.uk/get-advice-support/sleep-advice-service/
Eating and Drinking
Some neurodivergent young people may experience disordered eating. You can find support and information:
BEAT – www.beateatingdisorders.org.uk/
National Autistic Society advice on eating – www.autism.org.uk/advice-and-guidance/topics/behaviour/eating
ADHD and Eating challenges – https://add.org/adhd-and-binge-eating/
Children and Young People’s Mental Health and Wellbeing
The Autism and ADHD assessment pathway is not an emergency service. If you have your child is experiencing a mental health crisis they will most likely appear very distressed and worried and you require urgent support to help them:
- They might want to hurt themselves or someone else
- They might be feeling actively suicidal
- They might hear strange noises or feel that people are watching them or wanting to hurt them.
SET-CAMHS are a 24 hour, 7 day a week service. Use the following details to contact the service –
Monday – Friday 9.00AM – 5:00PM
Call SET CAMHS on Freephone 0800 953 0222
After 5:00PM: If your concerns escalate about your child outside of these hours, please call Mental Health Direct on freephone 0800 995 1000 (Out of Hours / Weekend or Bank Holidays).
If it is an emergency, immediate danger to life/safety dial 999 or visit Accident and Emergency (A&E).
If you feel concerned about your child/young person but do not feel they need immediate/emergency intervention, please phone the SET-CAMHS day time number during work hours.
Resources to support mental health and wellbeing
Kooth – www.kooth.com/
The Mix – www.themix.org.uk/get-support/speak-to-our-team
Shout – https://giveusashout.org/
Young Minds – www.youngminds.org.uk/young-person/
Papyrus – www.papyrus-uk.org/
Anna Freud advice for children who self-harm – www.annafreud.org/resources/family-wellbeing/supporting-treatments/supporting-children-and-young-people-who-self-harm/
Referrals
