Autistic Identity & Acceptance
It is important for parents to know that experiencing a range of different emotions following their child’s autism diagnosis is completely normal. The fear of the unknown can be extremely stressful and your emotions are valid and understandable. As a parent, it is hard to imagine your child experiencing challenges in life, and you would likely do anything to prevent this from happening. Make sure that you take care of your mental health and find support to help you navigate these complex emotions, so you can be in the best shape to help your child.
In the past, autism and neurodiversity has been portrayed in a negative way, looking at it as a deficit or disorder. Thankfully, that is changing through the neurodiversity movement, with autism acceptance and understanding. Through acceptance of neurological differences and listening to autistic voices, we are seeing a shift of focus on talents and interests to capitalise on strengths, allowing people to lead a happy and meaningful lives in which they feel appropriately supported.
We suggest finding out more about autistic identity. The following is a useful resource when considering autistic identity. Neurodiversity: https://youtu.be/UDzri9EvSJk?feature=shared
The National Autistic Society also has a useful page on explaining the diagnosis:
The ‘Amazing Things Happen’ video developed by the National Autistic Society is a lovely way of explaining autism to children.
The feedback from others following a diagnosis has been that connecting with people who are going through similar experiences can be really helpful. Linking in with the autistic community and talking with others about your shared experience is crucial to overall well-being. You will find a large autistic community online. Some sources of support for parents within the autistic community:
Facebook: ‘Ask Autistic Adults’ is a resource for parents of autistic children where you can ask questions relating to parenting and other autistic topics.
Twitter: use the hashtag #AskingAutistics to directly ask questions from the autistic community
Two Sides of the Spectrum podcast (episode 88), ‘Transforming the Parent
Experience’, offers insight from Jen Schonger about her experiences with her daughter’s autism identification.
Reading books about autism may also be useful www.autism.org.uk/pubs
These books can be helpful for children:
I am Utterly Unique: Celebrating the Strengths of Children with Autism.
The Ice-Cream Sundae Guide to Autism.
The Abilities in Me: Autism.
National Support Services
An important step after receiving a diagnosis is to take time to understand what it means and to support your child in making sense of what the diagnosis means for them. The following services offer a range of information and resources to help families post-diagnosis:
Ambitious About Autism is a National Charity supporting autistic children, young people and their families. They offer a range of written information and videos that can help you and your child understand autism. They also offer a range of advice on Education, Transitions and training sessions. https://www.ambitiousaboutautism.org.uk/understanding-autism/about-autism
Ambitious about Autism: Right from The Start Toolkit offers support for parents of autistic children during the early years:
Guide for Parents following a diagnosis of Autism for their child:
The National Autistic Society offers a range of support services, including information on what autism is, coming to terms with the diagnosis, where to get help and support, and recommended further reading.
Cerebra is a national charity for families of children and young people with
neurodevelopmental differences (including autism), which can offer general support and advice as well as guidance on sleep difficulties.
Shine offers a 10-week parenting group for parents and carers of autistic children of primary school age.
The Cygnet Parenting Support Programme is a parenting support programme for parents and carers of autistic children and young people aged 5-18. You can find details of your nearest Cygnet Provider by using the link below.
Local Support Services (Birmingham)
We are located in Birmingham, but each area will have their own local support services. You may need to do a google search for your area.
Early Help Birmingham. Early Help relies upon local agencies working together to identify children and families who would benefit from support, undertaking an Early Help assessment and providing targeted services to address those needs to significantly improve outcomes. Support for completing an Early Help Assessment or booking an Early Help conversation is available from the Early Help Support Team. Call 0121 303 8117.
Birmingham Healthcare NHS ASD Support provides information about support services for autistic children.
Autism West Midlands offers a helpline which welcomes calls from parents, autistic adults, carers and professionals who live in the West Midlands to discuss concerns they have about autism (before and after diagnosis).To contact the helpline call 0121 450 7575 or email info@autismwestmidlands.org.uk.
Communication
The National Autistic Society provides some general communication advice and guidance:
Speech and Language UK provides support to families and educators and has a useful resource library for families
Sensory Needs
The National Autistic Society has information on its website about sensory needs www.autism.org.uk/about/behaviour/sensory-world
The Autism Education Trust has produced this more detailed explanation http://www.aettraininghubs.org.uk/wp-content/uploads/2014/05/sensory-issues-in-autism.pdf
The Sensory Integration Network offers a free online short course for parents and carers. The course will help you to understand better the senses and how we process information from our senses. It will introduce you to what sensory issues can look like in a child’s behaviour and engagement and how to support them. https://www.sensoryintegrationeducation.com/courses/understanding-sensory-processing-and-integration-in-children-a-guide-for-parents-and-carers
Education
The Autism Education Trust is a not-for-profit programme led by two national autism charities – the National Autistic Society and Ambitious About Autism. Established and supported by the Department for Education, the AET promotes and supports partnerships throughout the education system to improve educational access, experience and outcomes for children and young people with autism. Website: www.autismeducationtrust.org.uk/
Your child may require special educational provision to help them reach their potential. An Education, Health and Care Needs Assessment (EHCNA) will identify the support that your child requires in education. You can speak to the SENCO at their school/nursery, who can apply for an EHCNA on your behalf, or you can
contact your local SENDIASS service, who will be able to offer advice and information to help you to do this yourself.
Our local SENDIASS service details are: https://www.birminghamsendiass.co.uk/
If you live outside of Birmingham, google SENDIASS and this will bring up your local service.
Welfare Support
If your child is under 16 you may be eligible to apply for Disability Living Allowance (DLA) on behalf of your child.
Emotional Regulation
Some people can feel emotions so intensely that it can sometimes be overwhelming and lead to meltdowns. A meltdown is a response to being completely overwhelmed. It is a loss of control (very different to a tantrum). It can look like crying, screaming, kicking, punching, biting, shouting or shutting down. An autistic meltdown can be a release of emotions and a build-up of anxiety and can occur because of anxiety and/or overstimulation.
How to help someone when they are having a meltdown
· Reduce your amount of language
· Use a gentle, calm tone of voice
· Give them lots of physical space.
· Use validating statements, e.g., "I'm here."
· Don't ask questions unless they're closed (yes/no) questions, e.g., "Do you want a drink?
· Don't try to reason with the person or get them to talk to you.
· Offer a comforting item e.g. a favourite sensory item
Things to consider
Communication: When someone is in a meltdown or shutdown, their ability to process spoken language drastically reduces. They may go silent and not be able to talk. You may need to consider non-spoken communication approaches to help them convey thoughts, feelings and needs. An assessment by a Speech and Language Therapist can help you to identify alternative and augmentative communication support for your child.
Sensory: If your child’s sensory system is dysregulated they may experience some sensory seeking behaviours such as biting, head banging and hitting, as well as anxiety and becoming overwhelmed. An assessment by an Occupational Therapist can help you to understand your child’s sensory needs and provide them with the input they need.
Behaviour: Consider all behaviour as communication. What is your child telling you? They may be telling you that they feel stressed and overwhelmed. Try and identify what are the triggers or causes of the behaviour so you can try and reduce the stress or eliminate it.
Burnout: Many autistic people experience burnout. The world is a stressful place to navigate as an autistic person, and the demands placed on autistic children are often greater than those of their neurotypical peers. It can be helpful to reduce the demands.
Pain: Many autistic children experience internal pain, such as gastrointestinal issues. Pain can often go unnoticed, especially if the child does not have a reliable and consistent mode of communication available to them.
Mental Health
The following books can be helpful to support the child’s mental health and emotional well-being as they get older:
The Guide to Good Mental Health on the Autistic Spectrum, by Jeanette Purkis,
Emma Goodall and Jane Nugent (2016). Jessica Kingsley Publisher.
A Volcano in my Tummy: Helping Children to Handle Anger, by Whitehouse & Pudney.
The Color Monster, by Anna Llenas.
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