Autism

Some tips to try

Short pieces from the library, and a first thing to try from each.

• Plan B, Agreed in Advance. For an autistic child, a change they have heard about in advance is easier to manage, so build a plan B into every plan.
  • Tell your child about changes as soon as you know about them.
  theparentbook.com/quick-tips/plan-b-agreed-in-advance
• Telling Your Child They Are Autistic. Start soon after the diagnosis, say a little at a time in words that fit your child’s age, and treat it as the first of many conversations.
  • Start soon after the diagnosis, and give a little information at a time.
  theparentbook.com/quick-tips/telling-your-child-they-are-autistic
• The Supermarket That Is Too Much. Plan supermarket trips so you leave before the noise and lights become too much for your child.
  • Plan the trip so you leave before your child reaches their limit.
  theparentbook.com/quick-tips/the-supermarket-that-is-too-much

The rest of each tip, with more to try and why it works, is in the library.

Something to do together

A story about what will happen. Before something new, such as the dentist or a new classroom, write a short story with your child about what usually happens there, and read it together in the days before.

What it is for. Many autistic children find not knowing what will happen harder than the thing itself. A short, accurate story about what usually happens tells your child what to expect, in words they can go back to as often as they like.

• The first step. Choose one thing coming up that is new, or that your child finds hard: a haircut, a school trip, a new classroom, a visit to a relative’s house.

Safety. If the photos show your child’s school or other children, keep the book at home and don’t post it online. A story doesn’t take the place of an adult keeping an eye on your child. If it is about roads, water or a busy place, stay close to your child on the day.

When to get help. Stories like this help some children with some situations; they are not a treatment. If your child’s distress around change is severe or getting worse, with frequent meltdowns or refusing to go to school, talk to your GP, your health visitor if your child is under five, or the team that assessed them if they have been assessed. If your child is hurting themselves, or tells you they don’t want to be alive, stay calm, thank them if they have told you, don’t promise to keep it secret, and act that day: ask the surgery for an urgent appointment, and if it is closed, use the routes under “If you need help right now”, at the foot of every page. If your child tells you that someone is hurting them, stay calm, thank them for telling you, don’t promise to keep it secret, and act that day, using those routes; if the person lives in your home, go straight to children’s social care or the police. If you are worried your child might seriously hurt themselves or someone else, use those routes straight away.

The other five steps, and your part in it, are in the library.

If you want to read further

• Neurodiversity, and the Conversation with the School. For parents whose child has been working harder and longer than other children to do things that come more easily to them. theparentbook.com/reader/neurodiversity-and-the-conversation-with-the-school

Worth your time

• A book for you: Autism and Asperger Syndrome in Childhood, Luke Beardon. Written for the weeks after a diagnosis, this short book explains autism as a different way of being and offers Beardon’s ‘golden equation’: autism plus environment equals outcome. uk.bookshop.org/p/books/autism-and-asperger-syndrome-in-childhood-for-parents-and-carers-of-the-newly-diagnosed-luke-beardon/a4ad5ecf780a0882
• A book to read together: I See Things Differently: A First Look at Autism, Pat Thomas. A clear, kind introduction to autism for young children: how an autistic child may experience noise, change and friendship, and how others can help. Works for an autistic child and for siblings and classmates. uk.bookshop.org/p/books/a-first-look-at-autism-i-see-things-differently-pat-thomas/1e1fb827d1392bc3
• Something to watch: What is autism?, National Autistic Society, YouTube. The National Autistic Society’s own short explainer on autistic characteristics and how they show up differently in different people’s everyday lives. A sound first stop after a diagnosis. www.youtube.com/watch?v=WLx9jyxJaRw
• Something to listen to: 1800 Seconds on Autism, Robyn Steward and Jamie Knight (BBC). A BBC podcast presented by autistic hosts, talking in half-hour episodes about meltdowns, sensory overload, routines, bullying and diagnosis from the inside. Helpful for parents and for autistic teenagers themselves. podcasts.apple.com/gb/podcast/1800-seconds-on-autism/id1444057570

Who else can help

Assessment usually begins at school rather than at the surgery. The GP is the referral route, but a school that has already tried and recorded support makes everything after it faster.

• The SENCo at your child’s school. The member of staff responsible for special educational needs. They hold the assessment routes, the in-school support, and the paperwork an EHCP needs. Ask for a meeting in writing, and ask what is already being tried under the graduated approach. This conversation usually has to happen before anything statutory can.
• Your local SENDIASS. The free, impartial SEND information, advice and support service every local authority in England must provide: SEN support, EHC needs assessments, exclusions, and what to do when you and the school disagree. As soon as special educational needs are in the picture. Search your borough’s name with SENDIASS, or use the national finder. councilfordisabledchildren.org.uk/about-us-0/networks/information-advice-and-support-services-network/find-your-local-ias-service

• National Autistic Society. The UK’s autism charity. A large advice hub, a directory of autism services near you, an online community, and a one-off support call from another parent of an autistic child, arranged through the website. From the first suspicion through assessment and after. There is no phone helpline to ring; the parent-to-parent call takes up to twelve working days to arrange. By arrangement, requested through the website · Parent to Parent Emotional Support Helpline: confidential one-off call staffed by parents of autistic children; arranged via the website. www.autism.org.uk/what-we-do/help-and-support
• Contact (for families with disabled children). The charity for families with a disabled child, whether or not there is a diagnosis yet. A free helpline, webchat, benefits advice and local groups. In the early days after a diagnosis, or while you are still waiting for one, when you need someone warm and practical. Contact Helpline 0808 808 3555 · Mon-Fri 9.30am-5pm (Tue opens 10.15am) · Webchat and an online enquiry form via the website; bookable Listening Ear calls contact.org.uk/help-for-families/information-advice-services/our-helpline
• IPSEA (Independent Provider of Special Education Advice). Free, independent legal advice on special educational needs in England: SEN support, EHC needs assessments and plans, exclusions and tribunal appeals. A call-in helpline and bookable advice appointments. When the school or the local authority has stopped moving and you need to know what the law says they must do. The SEND systems in Wales, Scotland and Northern Ireland work differently. IPSEA Advice Line and Call-in Helpline 0300 222 5899 · Triage Tue 9.30am-12.30pm; Call-in Helpline Wed 9.30am-2.30pm www.ipsea.org.uk/get-support

The full list for autism, with what each organisation does and when it is the right call, is at theparentbook.com/help/autism/services