We understand that children, young people and their families will have concerns when their child has been referred for an autism assessment and have been working hard to offer them support. Much of the same support available after an autism diagnosis is also available while a child or young person is waiting for an autism assessment.
SHaRON offers support, information and advice. SHaRON is a support network for parents and carers of young people with autism or parents and carers who have children waiting for an autism assessment. It is moderated by Autism Assessment Team clinicians, other autism professionals, staff from voluntary agencies across Berkshire and also offers the opportunity for families to receive parent to parent support.
If you are interested in joining, please email us at: sharon.jupiter@berkshire.nhs.uk
Please include your child’s name, and your name and contact details.
There are NHS locally commissioned services for East & West Berkshire which offer a range of support to families, wherever they are on their journey. No diagnosis is needed for any of these services, and you do not need anyone to refer you. The services offer pre assessment and post diagnosis support to families who have a child with ADHD and/or autism or who are waiting for either/both assessments. This includes support, information, advice as well as workshops to support with anger, emotional regulation and sleep difficulties as well as activities for children and young people. More details can be found on these websites:
Gems4Health for families living in Bracknell, Slough, Windsor & Maidenhead (East Berkshire)
AutismBerkshire: For families living in Newbury, Reading & Wokingham (West Berkshire) (in the Berkshire West Autism and ADHD section)
Parenting Special Children offer additional support. You can call them on 0118 9863532
The Autism Group offer free parent support and social groups, parent training sessions and a home visit service for residents in the boroughs of Slough, Bracknell and Windsor and Maidenhead. These services are offered to parents of children and young people of any age who either have a diagnosis of an autism spectrum condition or are awaiting assessment. You can call them on 07423 636339.
We also run free online workshops on sensory processing in young people.
This helpline provides additional advice, support or signposting while they are waiting for the assessment. 0118 2070930, Option 1.
Support in school should be needs led and it is important to put this in place as soon as possible, there is no need to wait for the assessment to happen first. When children and young people are referred, we provide a letter for schools emphasising this and providing information on resources that might be helpful in supporting the child.
Not all of the children and young people referred for an autism assessment will go on to receive a diagnosis, although they may still have support needs. The autism assessment, regardless of outcome, will not alter the needs that the child is presenting with on a day-to-day basis. Schools also have access to educational psychologists, behaviour support teams and other services as needed.
If a school believes that a pupil is in need of one to one or other support, which cannot be provided from the resources normally available to schools, they are able to request an Education Health and Care Needs Assessment to determine whether there is a need for additional provision.
Schools can initiate this process based on the pupil’s current level of need and it is not necessary to wait for an autism assessment to take place first. Many children and young people will have needs that can be met through Ordinarily Available Provision, which is all of the help, support and resources that are available without the need for an Educational Health and Care Plan.
Family Lives: Professional, non-judgmental support and advice for all members of the family
Speech and Language UK: A communication charity who offer a range of information services that provide help and advice to parents about speech, language and communication
AFASIC: This organisation supports parents and represents children and young people with speech, language and communication needs. Resources include books and DVDs and free downloads.
ERIC: Information, advice and guides for toilet training and children’s bladder and bowel problems
SEND Information, Advice & Support Service SENDIASS: (formerly known as Parent Partnership). It’s really important to talk to your child’s school about your worries. Information, advice and support to children and young people with special educational needs and their parents and carers.
You may also want to contact your local IASS (or google SENIDASS and your local authority name).
Social skills and friendships: These books give some useful ideas about how to help children understand and develop friendships. The unwritten rules of friendship; simple strategies to help your child make friends by E Kennedy-Moore & N Madorsky Elman and Friends Forever: How Parents Can Help Their Kids Make and Keep Good Friends by Fred Frankel
Support with meltdowns and developing problem solving skills: The book The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene is a useful resource for teaching “collaborative problem solving skills” ie the skills young people need to solve problems more flexibly and in ways that take into account their own and other’s needs and wishes.