Key issues raised through co-production
13. Increased demand for specialist autism services
13.1 Current demand for an Autism diagnosis, as well as for pre and post diagnostic support, is far outstripping supply; resulting in long and growing waiting lists for children and adults.
13.2 New pilot projects are in place, and planned, to better support those on the waiting lists in school and at home, but they too are oversubscribed.
14. Reducing waiting times for autism diagnosis
14.1 Merely redesigning the existing neurodevelopmental service, or investing in the current as is pathway to try and clear the backlog will not be a sufficiently transformational approach to deliver the required change. National workforce shortages mean that even where additional funding has been identified we have not been able to purchase sufficient additional capacity to meet the growing demand. The focus of redesign therefore needs to be on building capability and capacity across wider services to diagnose and support people with autism.
14.2 People who have autism and their families report that while a diagnosis is an important step in understanding the challenges experienced by their young person, a diagnosis alone is not sufficient to meet their needs while there remain gaps in specialist support and in the capability of mainstream services to appropriately support people with autism. This is particularly a priority within mental health services and schools. Any investment or redesign must prioritise support to meet the needs of people with autism, or characteristics that relate to autism
14.3 System modelling undertaken in other parts of the country suggests waiting lists are most likely to be impacted through reducing demand for a diagnosis by improving access to support and services for people with needs related to autism without requiring a formal diagnosis. The most effective way to promote independence, reduce mental ill-health and maintain resilience is to give autistic people personalised, responsive information, advice and support to navigate the most significant challenges they have. These challenges include managing anxiety, coping with transitions, navigating services and support, improving relationships with others, understanding themselves and solving problems.
People understood, it gave us a vocabulary to access support… and we stopped being offered parenting courses
A diagnosis of autism is important but tells you very little about an individual or their family needs.
15. Gaps in early help and preventative services 15.1 Families report gaps in adequate early help support for children and young people with autism, mental health needs and/or social communication needs. For example, there are limited resources in schools to enable identification and support for learners with social communication needs and social, emotional and mental health needs. 15.2 People with Autism and their families consistently stated that if there was more accessible support available early on, their needs would not have escalated to require specialist services. Parents understand that there are limited resources, but they want the system to balance investment of these resources along the whole pathway so that they don’t have to wait until they are in crisis to get help. 15.3 There are protective factors which support autistic people and their mental health. These are similar to the support needed by all people in our community: family, friends, meaningful occupation and selfawareness. Autistic people and families want support to sleep and eat well, to access and sustain education and paid employment, to have secure housing, to have a social life and make friends, to have romantic relationships and maintain a family. Having interests and hobbies which give a person a sense of purpose and occupy them is key. Access to autism information relevant to their age is important.
16. Gaps in specialist services
16.1 Following a diagnosis, there is limited specialist support for autistic people. Where pilots of specialist services have been successful, autistic people valued having an autism profile, shared across services, detailing their particular strengths and difficulties. Currently autistic people often access support from people with generalised non-specialist autism knowledge, or by people without any autism awareness or knowledge. 16.2 Gaps have been identified in access to interventions such as occupational therapy, speech and language therapy or family therapy prior to crisis point and there is no access to ongoing mental health therapy or to psycho-education in relation to Autism needs. Autism friendly pathways in eating disorder services and services for people with gender identity issues are required. 16.3 Autistic people and families talked about wanting to access specialist support to help them understand the impact of their autism as they went through transitions, faced significant life events and as their needs changed. There are no opportunities to revisit the autism diagnosis as an older teen or adult, and update knowledge and self-awareness. 16.4 People working to support autistic people in services similarly identified a gap in specialist expertise that they could access to adjust care and support plans when people’s needs change.
17. Support is not coordinated across services & services are difficult to access for autistic people 17.1 Autistic people and their families want support to be based on their needs where health, education and social care work together to make things better for them. The complexity and lack of coordination of pathways and support across the system mean families (and professionals) are unable to navigate them to access the support they need. 17.2 Autistic people have experienced difficulties accessing services, using them and getting their needs met by them. They were not offered suitable adjustments to the services they used, making it more difficult to use the services and to benefit from them, and they moved through services at a faster pace than suited their ability and needs. Mental health services have not been designed with people with autism in mind and they may be excluded from support or provided with short-term help for problems which may be ongoing and long term. 17.3 There is a lack of autism-specific and autism-friendly support. This reduced opportunities for social connection and a place to seek advice about what support is available. The systems across health, social care and education/training/employment are disconnected and their functions and access routes may not be well understood by the individual and their family and by the practitioners within other agencies. There is a need for training in relation to supporting people across all agencies.
18.1 Aligned strategies for young people and those with special educational needs and disabilities (SEND) highlight the importance of effective transition and preparation for adulthood. Moving between different stages of life, such as school, college and work, is especially hard if you find change difficult, as many autistic people do17. Support for autistic people therefore needs to be prioritised around periods of transition.
19. Workforce gaps
9.1 Parents reported that services could be better at making adjustments to support their autistic children to engage and access support, and professionals reported that they wanted to feel more confident and understand how they could be better at working with this group.
19.2 National workforce shortages exist for specialist autism expertise, which impacts on the ability of neurodevelopmental services to maintain capacity in services.
20. Support for those in contact with criminal justice system
20.1 Multi-agency public protection arrangements (MAPPA) are in place to ensure the successful management of violent and sexual offenders. Locally, a growing number of people with characteristics related to autism are referred to MAPPA.
20.2 The Channel panel provides support to those who may be vulnerable to being drawn into terrorism. The overall aim of the programme is to facilitate multi agency early intervention and divert people away from the risk they may face. Channel uses existing collaboration between partners to support individuals and protect them from being drawn into terrorism. Again, a growing trend has been identified of young autistic people who are referred to Channel panel for support.
20.3 There is an identified gap in specialist assessment and support for these individuals to inform multiagency partners about the best way to support the individual and avoid re-offending. While this is a small number of people, the risks are high for the individuals concerned and in relation to public protection.
21. Mental Health Crisis and Admissions to Mental Health Hospitals
21.1 Autistic young people 14-25 years old are being admitted to mental health hospital or diagnosed with autism in hospital. Deep dive reviews were undertaken to identify risk factors that contribute to hospital admissions for autistic people.
21.2 In the under 18 population, more people with autism and no learning disability are admitted to hospital. The following additional risk factors were also identified:
- Being out of school;
- Older teenage girls who weren’t identified as having behavioural problems;
- Late (teenage) diagnosis of autism; • A history of trauma (including bullying in school);
- Complex family dynamics including parental mental illness;
- Carer burnout;
21.3 For young autistic adults the following risk factors were identified:
- Adults with mental health diagnosis displaying risky behaviour;
- Autistic adults without a learning disability who do not meet Care Act eligibility and “fall between” services until they present to hospital or police services in mental health crisis;
- Inappropriate living environments, for example sharing with others who are not compatible; • Significant and rapid changes and escalation in support needs that community living providers can’t/won’t support.
22. Good practice
22.1 People told us positive stories of what had helped, and they made suggestions about what we need to do more
It helped when…..
The psychiatrist listening to him thinking he had autism and getting a diagnosis fast
Professionals listening to us and treating us parents as experts on our child and asking us “What do you think should happen?
Someone in the workplace who understands and can help make small changes. They made me realise I am human. They enhanced my good points and built on my skills.
We need more...
A compassionate online friendship and family support (sometimes from people I barely knew) was vital in maintaining my well-being.
Mentoring to help young adults and adults through transitions.
Online peer-support - particularly when people are housebound.
Ongoing support structure outside the NHS that adults with autism can access as needed.
Support for parents accepting diagnosis and understanding their own traits.
Giving parents the tools and understanding to help their child early; face-to-face groups as well as resources, to avoid crisis situation.
Inclusive practice and leadership in schools, community, youth settings
Support and services working to the young person’s timescales; not withdrawing because they haven’t connected or responded in the given time, but allowing trust to build.
Autism-specific emergency phone line for Young People and families who are in an autism crisis, not a mental health crisis
Peer support network from the earliest stages with trained experienced parent.
Someone who saw you and knows you are trying. Somewhere to signpost to when realise something wasn’t working