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
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
PROFESSIONAL HELP
Educational Psychology
USEFUL INFORMATION
ADHD Workshops by - A Hands On Approach
http://autismahandsonapproach.co.uk/ADHDworkshop/
Special Educational Needs Code of Practice
Royal College of Speech and Language Therapists
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