“In Newham: All autistic children and young people and their families are empowered to participate and thrive in an accepting community.”
Autism is a lifelong developmental condition that affects how people communicate and interact with the world. Around one in 50 people are Autistic, meaning there are upwards of 700,000 autistic adults and children in the UK.
Autistic Spectrum Condition affects people in different ways. Like all people, autistic children and adults have their own strengths and difficulties.
This diagram shows more clearly what is meant by the Autism Spectrum. Each individual has their own special mix of difference, which changes over time, depending on the support they are given and how difficult they find the environment they are in.
A short video which introduces Autism
In Newham all autistic people, whatever their age, should have the same opportunities as everyone else to live rewarding and fulfilling lives. This vision is shared by all public, voluntary and independent organisations that are working collaboratively in Newham to improve services for autistic people, their families and carers.
We want to support adults with autism to:
- be independent
- have choice and control so they can live fulfilling lives
- be fully participating members of the wider community
- voice their opinions and experiences
- have services that meet their individual needs
Being connected with others is vital.
So, if you need to talk, join Talk about Autism – the online community for parents and carers of autistic children and young people
Characteristics of Autism
The differences shown in the diagram may appear as follows : -
Speech and Language – Many Autistic people talk later than their peers and have difficulties developing language. Some do not use speech to interact with others as adults. Equally, some people with Autism can be very particular and exact about the language they use and can interpret language very literally.
Sometimes people mis-interpret this difference as direct or rude. It is important for family and friends of autistic people to understand their different way of thinking so that we do not ask too much, or too little of them and they know they are valued.
If you need some ideas on how to build the language skills of your child, please have a look at these videos compiled by Newham’s Speech and Language Therapy Team:https://www.youtube.com/watch?v=OqG3E7e-190&list=PLw0PyfjPrssXH58ucHe_reFkYmnmuRHXS
Being close to people and building friendships – There are lots of unwritten rules involved in making and keeping friends. Autistic people can find it harder to understand how to behave in relationships, and may want more or less time and closeness than their peers expect to give. Making boundaries and expectations clear, expressing them without frustration can be really useful to help Autistic people learn what these unwritten rules are.
Some Autistic people do not rely on friendships as much as non-Autistic people and may really enjoy their own company. Giving Autistic people opportunities to interact based around their own interests can be really helpful to build their confidence or desire to be close to people. For parents of young children please see this video https://www.youtube.com/watch?v=lFoF4G1PGB8 and the attachment about intensive interaction. This is a great way to build interaction and work towards new language skills.
Repetitive behaviour – When you do not understand the rules of how to interact, or learn language in the same way as other people do, repeating things feels safe. Autistic people might want certain actions to happen in the same way every time. If you need to make changes (For example you need to get on a plane for the first time, or you need to change a habit that has become unsafe), try doing this with the support of a Social Story. https://www.autism.org.uk/advice-and-guidance/professional-practice/social-stories
Sensory needs – Autistic people’s brains are wired slightly differently, and this wiring often affects how they feel and process information that they receive through their senses.. This can affect smells, tastes, colours, sound, touch, balance (also known as Vestibular awareness), body awareness (also known as Proprioception).
For example: autistic people may dislike noisy environments, notice smells more, dislike bright lighting, have a limited diet, dislike being touched, need to push or rock regularly, sit on the edge of their seat or not notice when they are feeling full at meal times. The more aware you are of this, the more you can support your child to understand and prepare for busy environments. Please watch “Living in a sensory World” video to help you support in the best way https://www.youtube.com/watch?v=DF3gk0yNuU0&t=267s
Strong interests and passions – Autistic people are often really good at focussing in on the detail of things. You might notice that your child has a really strong interest in a particular thing. Support your child with their interests and make new challenges easier by linking it to their interest. We see lots of progress with new skills when we work this way! It may also mean that they end up being a real specialist in their field as they get older.
A few famous Autistic people with strong interests which have helped them include:
Stimming / repetitive movements – Most people with Autism have some sort of repetitive movement (self-stimulation) which is comforting to them.
Sometimes it is because they feel where their body is in space differently (their senses of proprioception, and vestibular sense are wired differently to others) and this movement improves their sensory awareness. For some it is comfort driven, sometimes to block out other sensory overload, sometimes to reduce stress felt from navigating difficult situations. All these reasons mean that moving their body repetitively helps them feel ready to take learn and feel calm.
If your child is causing themselves danger with this, please offer them alternative safe ways to stim – jumping, using fidget toys, offering deep pressure massages. Please see the below page from the National Autistic Society: https://www.autism.org.uk/advice-and-guidance/topics/behaviour/self-injurious-behaviour/all-audiences
Overwhelm / Behaviour - Autistic people may find busy environments very tiring or stressful. Remember that interacting can be tiring for Autistic people and they probably need time unwinding afterwards, or to be able to avoid visiting them often. Understanding this may make all of your lives easier and prevent unnecessary meltdowns by reducing stressful times for your child.
The same can be said for expecting your child to act in a non-autistic way (Such as being expected to look in your eyes more often than they are comfortable to, or stop stimming). Imagine if your face was itching with hay-fever all day but someone kept telling you not to scratch: you would probably find yourself feeling very grumpy very quickly! Try to be understanding that you do not know how they feel, but their behaviour is a way to communicate their feelings and to help you learn what is difficult for them.
Have a look at the behaviour pages on the National Autistic Society if you need some advice: https://www.autism.org.uk/advice-and-guidance/topics/behaviour
Websites to browse through
National Autistic Society:
0808 800 4104 / www.autism.org.uk
Ambitious about Autism:
Includes Right From the Start - toolkit for supporting younger children: www.ambitiousaboutautism.org.uk/information-about-autism/early-years/parent-toolkit
Ambitious about Autism are a national autism charity who support autistic and young people so they can reach their potential.
For parents and carers of children with a disability in Newham: www.newhamparentforum.co.uk/
Free self-paced online course
Right Click – free online support programmes:
Autism and Bilingualism - for Families
See link below to e- leaflets for parents (which explain the benefits of bilingualism for autistic Children and young people
‘Understanding the impact of bilingualism for autistic children’
Support for young people’s mental wellbeing, available through the following resources
- Kooth – free online counselling and emotion well-being platform for ages 10-18, www.kooth.com
- Young Minds – young people’s section, including information about anxiety: https://www.youngminds.org.uk/young-person/mental-health-conditions/anxiety/
- Childline - Lots of support and information about different areas of pressure and difficulty for young people, including a calm zone with a toolbox to support young people feel better: https://www.childline.org.uk/toolbox/calm-zone/
- Happy Maps - Signposts to resources available for parents and children: https://happymaps.co.uk/
- CAMHS - offers signposting to resources available: https://www.camhs-resources.co.uk/websites
Please look through the following resources for further information
Scope: The sleep service we recommend is called Sleep Right, you can register online here: Sleep Right | Disability charity Scope UK 0808 800 3333
Newham talking therapies: It really is important to prioritise yourself as well as your child. Lots of parents who go through this process find it helpful to talk to someone who is not directly involved with the child’s care. You can sign up to Newham Talking Therapies | East London NHS Foundation Trust (elft.nhs.uk) and they will call you to discuss how they can support you. You can also call the Samaritans at any time on 116 123 or email firstname.lastname@example.org – they are there for anyone who is going through something difficult.
Young Minds: If you are unsure about how best to support your child with their feelings, Young Minds have a parents section, including Parents Helpline and Webchat: Parents Mental Health Support | Advice for Your Child | YoungMinds
Ambition Aspire Achieve: Welcome to Ambition Aspire Achieve - Ambition Achieve Aspire - Home (theaaazone.com)
AAA run monthly activity sessions for families with additional needs. These come highly recommended. School, social care or family support workers can refer you.
Resources for Autism: Home - Resources for Autism
Resources for Autism is a registered charity. They provide practical services for children and adults with a diagnosis of autism and for those who love and care for them. They have a team of trained, enthusiastic and kind staff and volunteers offering a wide range of support. All their staff are autism specialists who understand communication and sensory needs. For more information please download Resources for Autism Flyer and view their 1:1 Support Offer here
Newham Autism Alert Card
The Newham 'Autism Alert Card' is an ID card for people to have so they can show it to anyone including professionals to help them or support them in accessing main stream services.
Benefits of the Autism Alert Card:
- Helps the police, emergency services and other organisations to recognise that they are dealing with someone who has autism
- Helps the card holder to feel safe and more confident when out and about
- Promotes better all round management of issues and situations involving people with autism
- Helps to raise awareness of autism among professionals and the Criminal Justice System
To order an autism Alert card or for more information please email: email@example.com or call Sandra Herman on 02033739788
Dynamic Support Registers
The Dynamic Support Register is a register of people with learning disabilities and/or autism who may need higher input from services and who may be at risk of being admitted to a specialist or mental health hospital.
The register helps local support teams to identify those who would benefit from a Care (Education) and Treatment Review (C(E)TR).
An individual should be added to the register if they meet certain criteria that would put them at risk of an admission, for example: presenting in crisis at A&E, concerns about the longevity of a placement or home environment, being excluded from school or unstable/untreated mental illness or behavioural challenges.
For more information on how to self-refer yourself, or a child or young person under your care, please email the local register holder:
Adult Register Holder - Robin Betts Email: elt-tr.NewhamLD@nhs.net
Children Register Holder - Matthew Richardson Email: firstname.lastname@example.org
If you would like more information of the Newham registers, then check out the handy information pack attached under Downloads on the right of this page.
Or if you would like to know more about the national policy regarding the registers and CETR’s, then visit the NHS England website link here - Dynamic Support Register (DSR) and Care (Education) and Treatment Review C(E)TR Policy and Guide