The Secret Life of Rose by Rose Smitten - an easy-to-read starting point
The Spectrum Girls’ Survival Guide by Siena Castellon
A Different Kind of Normal by Abigail Balfe
A Kind of Spark by Elle McNicoll
The Panda on PDA by Gloria Dura-Vila – good for a PDA profile
Supporting Spectacular Girls by Helen Clarke
Nurturing your Autistic Young Person by Cathy Wassell
Aspergirls by Rudy Simone
Asperger's and Girls by Tony Attwood and Temple Grandin
The Complete Guide to Asperger’s Syndrome by Tony Attwood
Social Skills for Teenagers and Adults with Asperger Syndrome by Nancy J Patrick
Can I tell you about Asperger Syndrome? A guide for friends and family by Jude Welton
Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Gina Marie Moravcik, Samara Pulver Tetenbaum, and Shana Nichols
Education and Girls on the Autism Spectrum: Developing an Integrated Approach by Judith Hebron and Caroline Bond
Smart but Scattered by Peg Dawson
Reports focusing on girls flying under the radar:
https://www.kirkleeslocaloffer.org.uk//girls_and_autism_flyingundertheradar.pdf
https://autisticgirlsnetwork.org/keeping-it-all-inside.pdf
Aspire: The Female Autism Network https://aspirefemaleautismnetwork.wordpress.com/
The National Autistic Society www.autism.org.uk
Autism Central https://www.autismcentral.org.uk/
Autism Connect – a social network www.autism-connect.org.uk
Ambitious for Autism https://www.ambitiousaboutautism.org.uk/
Autism Understood https://autismunderstood.co.uk/
Connections in Mind Executive Functioning https://connectionsinmind.com/
We help people connect with organisations and local services to receive the best available support. If your child's or young person’s needs lie in social communication and language, we provide links to help support and resources.
PARENTAL SUPPORT AND CHARITIES
Financial Support
- Social Security Disability Guide - m-n-law.com/social-security-disability-insurance-benefits-guide/
- https://www.turn2us.org.uk/
- https://www.disability-grants.org/
- Government Grants and support http://mygrants.co.uk
Charities
The National Autistic Society www.autism.org.uk
Autism Central https://www.autismcentral.org.uk/
Autism Connect – a social network www.autism-connect.org.uk
Ambitious for Autism https://www.ambitiousaboutautism.org.uk/
Autism Understood https://autismunderstood.co.uk/
Connections in Mind Executive Functioning https://connectionsinmind.com/
AFASIC
ICAN
Dyspraxia Foundation
http://www.dyspraxiafoundation.org.uk
The National Autistic Society
Independent Panel for Special Education Advice IPSAE
The British Dyslexia Association
The Michael Palin Centre for Stammering Children
Email: info@stammeringcentre.org
RNIB Royal National Institute for the Blind
Connections Disability, Information, News and Community Centre
Scope - The national charity for people with Cerebral Palsy
Sense - the UK's leading organisation working for people with deafblindness and associated disabilities
National Attention Deficit Disorder Association
Institute for Attachment and Child Development
Down Syndrome Information Network
Mencap - understanding learning disability
PROFESSIONAL HELP
Educational Psychology
USEFUL INFORMATION
A Hands-On Approach
https://autismahandsonapproach.co.uk/
Special Educational Needs Code of Practice
Royal College of Speech and Language Therapists
Supporting Your Neurodiverse Child: Written for parents, by parents
Elemy, is an innovative, tech-forward provider of in-home and online applied behaviour analysis to help children on the autism spectrum meet their unique needs.
https://www.elemy.com/studio/guides/parents-guide
https://www.elemy.com/studio/autism-resources/resources-and-help
https://www.elemy.com/studio/aspergers/symptoms-and-signs
https://www.elemy.com/studio/autism/levels
EDUCATION AND SPECIAL NEEDS SOLICITORS
Maxwell Gillott
Email: office@mg.co.uk
- The Complete Guide to Asperger's Syndrome by Tony Attwood or the audio read Tony Attwood
- Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood.
- Language for Learning, A Practical Guide for supporting Students with Speech, Language and Communication Needs.
- Parenting an Autistic Teenage Girl, Teenagers With Autism Spectrum Disorders, ASD Books by Lance Childs
- A Guide for Parents and Carers of Children with an Autism Spectrum Diagnosis, by Rachel Pike/ Autism Supporting Your Teenager, by Caroline Hattersley.
- Jacqui Ashton Smith: https://www.slideshare.net/NationalAutisticSociety/stream-2-session-2-jacqui-ashton-smith; video- https://vimeo.com/27046296
- A blog on autism in girls: https://blog.optimus-education.com/autistic-girls-my-steep-learning-curve
- National Autistic Society Towards understanding and under recognition of girls and women on the autistic spectrum by Judith Gould: https://journals.sagepub.com/doi/abs/10.1177/1362361317706174;
- 56 Traits of Aspergers Syndrome and High Functioning Autism https://www.audible.co.uk/pd/56-Traits-of-Aspergers-Syndrome-High-Functioning-Autism-and-Autism-Spectrum-Disorders-Audiobook/B017WOZ7FY?source_code=M2M14DFT1BkSH082015011R&ds_rl=1235779&ipRedirectOverride=true
- National Autistic Society article on Aspergers by Judith Gould https://www.autism.org.uk/about/what-is/asperger.aspx
- Research outreach article on PACT (Paediatric Autism Communication Therapy): https://researchoutreach.org/articles/working-parents-carers-help-autism-development/
- Autistica article on evidence-based autism intervention: https://www.autistica.org.uk/downloads/files/Autistica-evidence-summary-Parent-led-video-feedback-therapy-4.pdf
- Autistica article on PACT, 2021
Example of an exciting new therapy ready for launching:
PACT The Paediatric Autism Communication Therapy (PACT) is a therapy where parents and therapists work together to identify how a child prefers to play, using video recordings. They then adapt their interactions with their child to match that style. Young children learn a lot of skills through play but may approach it in very different ways. PACT has shown that by supporting the alternative ways autistic children learn, we can help them build stronger social communication skills, help parents feel more empowered, and increase families’ resilience. The therapy addresses autistic people and families second-highest priority for autism research: finding “effective interventions to develop communication and language skills”.52 It also embodies a more progressive approach to support that embraces autistic people’s differences and opposes attempts to ‘normalise’ or ‘mask’ atypical behaviour.29 Crucially, PACT has strong evidence that it is acceptable, feasible, and effective. PACT is currently one of the only early interventions directed at autistic children and families that has demonstrated efficacy through high-quality Randomised Control Trials.53,54 results from the initial trial prompted NICE to describe a generalised version of PACT in the list of “key priorities for implementation” of its Clinical Guidance for supporting autistic children.55 The second PACT trial was awarded NIHR Signal Study status for its “high-quality design and relevance to UK decision-makers”.56 Other trials have since replicated evidence for its mechanisms in different age groups, countries and service contexts.57,58,59,60,61,62 PACT is ready for use, and accredited training for it is immediately available.63 Both the therapy resources and training for PACT have recently been digitalised for online delivery. An adapted version of PACT is currently being tested in home and education settings, making it cheaper and easier to deliver.64 Despite this, families face a postcode lottery in their access to PACT. This is an unjustified source of health inequality.
Autistica has:
- Published an evidence summary on parent-led video feedback therapies, recommending that “all local areas should have professionals accredited to deliver PACT”.40
- Working knowledge of many of the most promising interventions currently being developed to support autistic people and families.
The government needs to:
Establish a central fund to launch new therapies into practice within the NHS, social care, and education systems. The fund should cover the training costs for professionals to learn new manualised therapies and enable services/commissioners to backfill roles for a short time while therapists become practised in the new intervention. The Fund should start by rolling out the PACT therapy nationally and expect to support post-diagnostic empowerment programmes soon. Autistica can provide costings for this.
Apportion of a small fund to digitalise training programmes for key therapies. For example, PACT training could be fully digitalised for a small investment of approximately £150-200k. This would reduce the cost of training each professional by up to 50% and make it possible to develop a virtual professional network, to provide ongoing supervision and advice to newly accredited therapists.
Fund an expert group of intervention scientists, autistic people, families, and research bodies to shortlist the most promising interventions for the launcher. Interventions should be prioritised based on their fit to community priorities, the quality of evidence for their acceptability, feasibility, and efficacy, how likely they are to improve existing practice, and how ready they are for roll-out.
To read the full plan, you can download it here: Autistica-Support-Plan
PACT information for professionals PACT professionals flyer_2020_issuu
PACT information for parents PACT Parents flyer_2020_issuu
OTHER LINKS
If your child's difficulties lie outside of communication one of the following organisations may be a potential source of support:
IPSEA Independent Panel for Special Educational Advice Tel: 0121 420 3007
PACT
http://www.pactrtraining.co.uk
University of Manchester PACT research
http://research.bmh.manchester.ac.uk/pact/about/
Scope - The national charity for people with Cerebral Palsy
Sense - the UK's leading organisation working for people with deaf and blindness and associated disabilities
National Attention Deficit Disorder Association
Asperger Syndrome - Information & Support
Institute for Attachment and Child Development
http://www.instituteforattachment.org
Down Syndrome Information Network
Mencap - understanding learning disability
Sleep Practitioner
Nickie Sutton - https://www.peaksleep.co.uk
Jazmin Regist - amerisleep.com/blog/obstructive-sleep-apnea-in-children/
Obstructive sleep apnea, or OSA, is when a child stops breathing while sleeping. OSA, if left untreated, can cause many other harmful side effects such as illnesses, attention issues, on top of lack of sleep, and more. We recently created a guide on OSA including information on:
- Causes and symptoms of OSA
- The effects of OSA
- Treatments for OSA and more
Gender Identity
Gender Identity Workbook for Teens
The Gender Identity Workbook for Kids
ACRONYMS EXPLAINED
SEND - Special Educational Needs and Disabilities - is a term used to describe children and young people who require different or additional support to learn and thrive in a school setting. Further information can be found on the government website.
SENDco - Special Educational Needs and Disabilities Coordinator - A SENDCO is a qualified teacher who works in schools to support students with special educational needs and disabilities (SEND).
SALT - Speech and Language Therapy - is a service that helps children and adults with communication, eating, and drinking needs. SALT therapists can help with a range of issues, including:
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CommunicationSALT therapists can help children and adults develop communication skills and interact functionally.
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SwallowingSALT therapists can help with swallowing difficulties, also known as dysphagia, through exercises, dietary advice, and medication changes.
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Eating and drinkingSALT therapists can help children and adults with their eating and drinking needs
EHCP—Education Health Care Plan—is a legal document that outlines a child or young person's special educational, health, and social needs and the support they need to meet them. EHCPs are created by the local authority and are used for children and young people who need more support than is available through special educational needs support. Further information can be found on the government website.
APDR - Assess Plan Do Review - a four-step cycle that educational settings use to identify and address a child or young person's needs:
Assess - Identify the child or young person's needs
Plan - Create a plan to meet those needs
Do - Put the plan into action, monitor it, and make adjustments as needed
Review - Check how well the support is working and make changes if needed
ADIR -
ADOS -
BOSA -
RTC -
PACT -