Gateshead Autism Strategy 2025-2030

I statements

• I can get information and advice that helps me to manage while I am waiting for an assessment, and to be as well as possible - physically, mentally and emotionally.
• I can get clear, accurate, accessible information and advice that helps me to:
  • Think about and plan my life
  • Think about my health and how I can be as well as possible - physically, mentally and emotionally
• I am supported to understand what being autistic means to me
• I can get support from people who have a similar lived experience to me
  • I do not have to wait until i get a diagnosis to have my needs met.

Where are we now?

The difficulties and stresses sometimes created by a long wait times for an autism diagnosis can place increased expectations on the assessment. It is unlikely that a diagnosis will relieve all the pressure on the individual and family as it is part of a wider journey, not a solution.

For children and young people in education, support is offered pre-diagnosis. New tools are being developed such as the Special Educational Needs and Disabilities (SEND) thresholds to support education settings to identify barriers to learning and make reasonable adjustments at the earliest opportunity regardless of diagnosis. Likewise, support is offered by the Early Years Service (0-5 support), High Incident Need Team (HINT), and the Quality Assurance and Monitoring Team and Education Support Service to support education settings with SEND provision.

The Daisy Chain project delivers Gateshead Autism Hubs offer for parents and carers of autistic children, young people and young adults (0-25 years). Autism Hubs offer information, advice and support on a range of challenges that can impact on those who are autistic and their families. The Hubs provide drop-in sessions, peer support groups, and training for parents, carers, and professionals. Additional information on various support offers for children, young people and their families can be found on the SEND Directory and the SEND Local Offer. Peer support can also be accessed via Gateshead's Parent/Carer forum.

Progress has been made in relation to support for children, young people and their families. However, more work is required to ensure that the offer is clearly articulated to families. Likewise, specific support for adults pre and post diagnostic is required to ensure our autistic residents are fully supported and can reach their full potential.

From 1st January 2025 Tyneside and Northumberland Mind will be providing pre and post autism diagnostic support for adults who live in Gateshead.

The overwhelming feedback from autistic adults, is that there is little follow up and support, particularly with those considered more able. YVC Understanding autistic people's experiences of being diagnosed with autism (opens new window)

"I was thinking to myself, 'what happens now? What do I do now? Is my life going to change since the diagnosis?' I feel like I've got worse. It's like, 'there you go, there's your diagnosis. Bye bye, now.'" "I got more info when diagnosed with diabetes last year than I got from my autism diagnosis. I've asked multiple times and got nothing."

Our commitment

Children, young people and adults and their families and/or caregivers will have access to information, advice and support pre-diagnosis, as well as post assessment support. People will not have to wait for a diagnosis before they can get the help they need. We will undertake regular reviews of services and support to make sure that they meet the needs of the people and families of Gateshead. We want to offer people the help and support they need when they need it.

What we will do

Information review:

Review and, where needed, redesign information for children, young people and adults who are on the waiting list for an assessment and who have been diagnosed, as well as their families and/or caregivers. Ensure that information available will provide details of existing services and support that is able to be accessed while awaiting assessment and once diagnosed.

Review the current advice/support offer:

Where appropriate, across the age ranges, provide Psychoeducation support for autistic individuals.

Clarify the Autism Central offer available (nationally funded) and clearly advertise and articulate the offer available for children and young people.

Reduce challenges associated with waiting

Children & Young People:

Work jointly across the system, linking into existing improvement work already underway in relation to mental health and neurodevelopmental pathway development.

Work collaboratively with children/young people, their families and/or caregivers, as well as key partners in co-production to identify any gaps in pre/post-diagnostic support. Work will be undertaken in partners and will link to existing local strategies and plans (i.e. SEND Strategy)

People and their families will not have to wait for a diagnosis before they can access the support they need.

Adults:

Undertake work in partnership with people with lived experience to understand best practise and explore options for support. Test out and work towards implementing a model of pre and post diagnostic support for adults.

What does good look like?

Autistic children, young people and adults can access support regardless of if they have a diagnosis or not.