Each area has specific demographics, local partnerships and service delivery models but there are common areas of challenges including:
Access to diagnosis
National Institute for Clinical Health Excellence (NICE) for autism diagnosis states that it should take no longer than three months from initial referral to diagnosis. Diagnosis is usually undertaken by trained clinicians. Hardly any localities meet this target and waits of 18-24 months for diagnosis are not uncommon. This can then negatively impact on access to social care, education and housing support, a priority identified in the 2021 DHSC Autism Strategy Implementation Plan.
It can be the case that autistic people and families to receive minimal support whilst on the waiting list. Autistic people with presenting needs such as anxiety, demand avoidance or attention issues may also not those needs met whilst waiting for the autism diagnosis.
Assessment and support for co-existing conditions
Autistic people often report that whilst the diagnosis itself is a positive experience, the immediate follow up is less so, particularly at a time when the person and those nearest to them are undergoing a period of adaption to the formal diagnosis. This can mean individuals presenting to council and health services without a full picture of their needs.
Autistic people report that referral on for the assessment and support of co-existing conditions can be sporadic, leaving the picture incomplete for the person themselves and for those supporting them. Of particular importance is access to sensory assessment, especially given the link between sensory overload, so-called challenging behaviours and expensive placements.
Low level preventative support
Once diagnosed, many autistic people do not require access to higher tiered assessment and support such as supported living, residential care, crisis intervention and mental health inpatient facilities. Indeed, for many, these can be inappropriate and counterproductive. What autistic people and families do consistently note about their post diagnostic experience is the lack of simpler and often cheaper forms of support.
Access to information, signposting for advice, self-help groups for the autistic person and for parents, skills training for things like college and job application processes, social skills, managing risk and understanding behaviours, befriending and autistic mentors and peer support workers can also be of use and the case studies accompanying this guide provide examples of positive practice. See also Social Care Institute for Excellence.
Benefits, employment and education support
Whilst autistic people can be eligible for Department of Work and Pensions (DWP) Employment Support and Access to Work initiatives, they often report finding both the processes of applying for benefits such as PIP or Universal Credit and the physical environments or digital platforms extremely hard to navigate, so impacting negatively upon wellbeing.
Autistic people also comment on the lack of support to get into education and employment and once there, the lack of support to stay and to thrive within educational and work settings, sometimes resulting in a revolving door pattern that disrupts career progress, economic growth and access to opportunities to contribute to communities.
Councils are required to report the proportion of adults with a learning disability in paid employment as an Adult Social Care Outcome Framework indicator yet the numbers of autistic people with a learning disability remains low with limited access to the necessary specialist support.
Again, access to reasonable adjustments for autistic people which can often be low cost (see Manchester Guide) can make a positive contribution to individual lives.
Housing
Many autistic people can also struggle to access quality accommodation, especially inclusive housing where needs arising from their communication or sensory differences are considered. This can be detrimental to the autistic persons physical and mental wellbeing (or to that of partners, brothers, sisters or and parents where they live with family), leading to misunderstandings and potential disputes with neighbours and landlords. There may also be a higher prevalence of homelessness amongst autistic people.
Community acceptance and inclusion
A wider issue is how autistic people and families are perceived and treated in communities where stigma and a lack of acceptance is often made worse by the lack of autism friendly businesses, leisure and cultural facilities and transport.
Autism training led by autistic people, together with a focus on reasonable adjustments to environments, organisational processes and worker communication styles can all contribute to making communities more autism friendly.
Key question: Does your council require service providers to undergo autism training and to audit their environments, processes and communication styles to make them more autism friendly? Is the council doing this too?
The impact of COVID-19
Reports from the London School of Economics, the Covid Social Care Task Force and NAS indicate that assessment and support services for autistic people and families either reduced or were postponed during lockdown. Whilst many have since been restored it has not been possible to do some to the same levels or in the same ways as pre-COVID-19.
Coronavirus has exposed issues of increased discrimination, reduced access to assessment and support, digital access and skills issues and the impact of prolonged isolation on physical and mental wellbeing. Also, the potential impacts of long covid and its impact on autistic people who already struggle with physical and mental health inequalities, some of whom may not have been considered eligible for assessment and support services because of lack of awareness of the impact of being autistic.
Key question: What post COVID-19/lockdown checks have been triggered to check the wellbeing of all local autistic people?