Requests from families for help have run at record levels since the launch of the Berkshire West Autism & ADHD Support Service at the start of this year.
Autism Berkshire’s family support team had almost 1,000 contacts in the first quarter of 2021 with families registered at GP surgeries that are part of the Berkshire West NHS Clinical Commissioning Group, which commissions the service from Autism Berkshire and Parenting Special Children.
Autism Berkshire’s family support team assisted 40% more families during this period than in the first quarter of 2020, at a time when they were also providing services in East Berkshire. The Berkshire West area is made up of the Reading, Wokingham and West Berkshire council areas.
Extra autism advice workshops were delivered to meet high demand for places and there were marked increases in the number of contacts with families of autistic girls and requests for advice about how to help children struggling with anxiety during the coronavirus pandemic.
Alongside a CCG-funded Teen Life course, for parents and carers of autistic 10 to 16-year-olds, an additional fully-subscribed course, funded by the Postcode Lottery Community Trust, was started during the quarter.
The service specification called for 15 Home Visits to give families one-to-one tailored advice about autism during the three-month period, but 81 were carried out, via video or phone calls.
Parents and carers of autistic children and young people were also able to benefit from an online support group between January and March, called the Friday Lunch Break, which helped inspire a group of parents of teenage girls to set up their own weekly online support group to meet up and share ideas.
A new social interaction skills course, led by members of Parenting Special Children’s team, for 11 to 15-year-old children and young people with an autism or ADHD diagnosis, or a dual diagnosis, proved popular with the participants.
They reported feeling more independent and confident, better able to initiate and engage in conversations and form relationships and said they would recommend the group to other young people. Their parents were equally positive and said they had seen their children’s confidence boosted.
A similar course, for primary school age children, will take place later in the year.
Feedback was also overwhelmingly positive for a Transition to Adulthood workshop, delivered by Parenting Special Children, to equip parents and carers with knowledge and skills to support young people’s transition to adulthood, including the move from children’s to adult social care services and sources of specialised advice and support.
Much of the increase in demand for support can be attributed to the ongoing effects of the coronavirus pandemic and associated lockdowns, and their impact on family life and health and wellbeing.
However, increased awareness of the availability of support while children and young people are waiting for autism and ADHD assessments and after diagnosis also played a part. Referrals for support from the service from GPs and other professionals, or recommendations to parents to request help, increased noticeably during the first quarter of 2021.
Most families had multiple contacts with the service, as initial enquiries to the Helpline usually led on to attendance at autism and ADHD advice workshops and courses, or Home Visits, or requests for follow-up advice.
Many parents said they valued being able to have “conversations” by email with family support workers, as they could send or read a message late at night when their child was in bed.
Alongside requests for advice about specific aspects of autism and ADHD, the disruption caused to children’s education by the pandemic and sometimes patchy help from schools with home education during classroom closures were issues raised by many parents who contacted the service.
They were often unaware of the existence of the IASS services in Reading, Wokingham and West Berkshire and the support that is provided.
Feedback from parents who were signposted to their local IASS indicated that as a result they felt more supported in managing their relationships with their children’s schools and, if necessary, in seeking more support in school, a change in a child’s placement, or applying for an Education, Health & Care Plan.