Autism (health and wellbeing needs in South Tyneside)

Health and social care

Autistic people report that not being able to get a diagnosis causes anxiety and frustration.

Misdiagnoses can contribute to mental health difficulties and problems for people.

There are examples of people receiving late diagnosis (for example when people are aged 40+).

People told us that obtaining a diagnosis creates better recognition and treatment under the Equality Act. It enables people to access appropriate services and is cost-effective, such as for mental health inpatient services.

Whilst progress has been made in relation to greater awareness, understanding and recognition of autism, there is still more to do. 

Autistic adults have highlighted that professionals across disciplines and organisations often lack knowledge about autism and autism specific services to refer patients to seek a diagnosis.

A range of training would be beneficial for staff, and this would require to be tiered according to role and involvement with people with autism.

Autistic people told us that it is often difficult to navigate systems and when they are able to, there is lots of information that they can often struggle to digest.

Feedback from work with the Autism Hub and the local authority's Strategic Carers Liaison Officer reflected how challenging it can be for people to care for autistic relatives (both children and adults).

Following some group meetings in a cross-section of families and adults, themes arising from the feedback are listed below:

• Believe us: Parents sometimes feel that their views are not listened to / believed. Parents reported that masking can contribute to varying presentation in a school setting and that school's views are considered above their own.
• Only ask us to tell our story once: Professionals to become more effective in communicating so that residents don't have to repeat their story. Whilst residents recognised that some information may have to be repeated, professionals to make best use of existing information (i.e. for child's history).
• Communicate clearly: Professionals to recognise and appreciate individual's other commitments; if a practitioner is not able to make an appointment, then this is communicated as soon as possible.
• Keep things simple: Make changes to the system to ensure things are as straight forward as possible.
• Proactive support: It would be good to have more support available without a diagnosis.

Housing

There is currently a lack of suitable accommodation in the borough for autistic people. 

Similarly, to the national landscape, housing provision has been historically challenging to secure.

Choice can sometimes be limited, and available provision tends to be shared independent supported living schemes that can be unpopular and difficult to let. 

The local authority current accommodation offer shows there to be:

• An over reliance on costly residential placements, many of which are out of borough and do not support independence or the Council's commitment to the transforming care agenda.
• Poor / limited availability of good quality supported accommodation to meet the needs of autistic people.
• A reliance on a "shared lives" option that does not promote longer term independence.

With that in mind, there are two specialist housing sites which are currently developed; one which will provide 10 bungalows specifically for people with autism, whilst the other will provide 5 bungalows and a block of 6 flats for those with learning disabilities and / or autism.

People moving into the accommodation will become tenants of Karbon Homes and will have an assured tenancy. The developments will be available in Autumn / Winter 2024.

There are also 3 new extra care schemes being developed across the borough which will provide much needed modern accommodation for people of all ages (18+) and all needs. The accommodation will be vibrant and open to the wider community with bistro style cafes and facilities. The builds are sequential with the first scheme being available late 2026.

The local authority has prioritised the following areas to be actioned across 2023 to 2024:

• Co-produce an all-age Accommodation Strategy for people with care and support needs
• The development of a landlord framework to continue to support quality, new accommodation options to meet the needs of local people, ensuring the optimisation of external funding.
• A review of the current stock and needs to ensure accommodation options are fit for purpose.
• Work with partners to support the build and allocation of the new accommodation.

In addition to the above, we have been told by autistic adults, through co-production within the community, that the following are also issues they would like consideration to be given to:

• Sensory issues, caused by buses, main roads and noise in adjoining properties. 
• People feeling ill-equipped to challenge a genuine noise nuisance, causing deterioration in health and wellbeing.
• Some people feel that adaptations and assistive technology may be needed to address sensory and other problems.
• Family carers report that they are worried about living arrangements for their relatives with autism in the future, when they are less mobile. People's perception is that they have limited choice about where they live.
• Difficulty making and maintaining relationships can hamper the ability to share accommodation.
• The wrong housing environment can lead to anxiety and difficulties for people with, in some cases, challenging behaviour.
• Landlords, and professionals supporting people to find housing, need greater autism awareness.

Moving forward, an ambition of the Council is to explore more opportunities for people with learning disabilities and / or Autism to live as independently as possible.

One option includes Shared Ownership Schemes, which have been set up in other parts of the UK but are yet to have a substantial footprint in the North East of England.

Shared ownership schemes have been established as a low-cost home ownership option for people of modest incomes for many years.

HOLD (Home Ownership for people with Long-term Disabilities) is a similar government-backed shared ownership scheme specifically for people with a long-term disability to share in the ownership of their home with a housing association.

Employment and employment services

Autistic people bring many skills and benefits to the workplace. For example focus and diligence, pride in the job, independent and unique thinking, and attention to detail.

Autism awareness-raising with employers is regarded as essential.

People report that the attitude of employers and work colleagues impacts significantly on the ability of a person to work. 

Autistic people do need to know who to approach in the workplace for support.

Support for managers and employers is essential in terms of building an understanding of what reasonable adjustments could look like. It does not have to be major changes but small things.

Many autistic people need meaningful activity, particularly if they are unable to work. Support is needed with functions that enable people to work, for example social interaction, sensory issues, independent travel, time-management.

There is an important role that large employers can take in providing guidance and consistent support across human resources and occupational health, which has been discussed in appropriate forums. 

Universal services

The autistic people we spoke to in South Tyneside describe autism as affecting every aspect of their life. 

Autistic adults report a perception that the range of appropriate support services in South Tyneside is still not adequate and there remains a lack of autism specific opportunities.

An example provided was in respect to activities for children, and lack of autism only sessions.

A lack of information causes anxiety and risks people missing out on opportunities.