Autistic people’s struggles in Peterborough and Cambridgeshire laid bare in new report

Autistic Voices has been published by independent health and care champions Healthwatch Cambridgeshire and Healthwatch Peterborough.

The report is now being shared with local authorities and health commissioners to help shape a new All Age Autism Strategy for the area.

Janet Dullaghan, autism lead for Cambridgeshire and Peterborough local authorities, called the report “a really good, comprehensive piece of work” and said that the areas highlighted and the report’s recommendations will be incorporated into the new autism strategy.

The report reveals:
. Some of the challenges and long journeys that autistic people have faced to get diagnosed and find support – highlighting very lengthy waits for assessments of three to five years

. One person said it had taken a decade to get their diagnosis because of the many barriers to getting help

. The difficulties autistic people experienced in getting reasonable adjustments to help them stay in work and access health care

. How people have felt dismissed, excluded and misunderstood – with some suffering in silence for years.

Local autism campaigner Nazreen Bibi said: “Early autism diagnosis and intervention has a long term positive impact on individuals and their families. The issue with waiting lists and support is an ongoing problem - there is a huge gap in services, particularly in mental health provision.

“However, with innovative planning and co-production between local providers, local authorities and the NHS, the problem can be resolved.

“Autism assessments can be conducted online and there is a local autism specialist provider willing and eager to work with stakeholders to ensure that waiting lists are reduced and autistic people and their families receive timely and appropriate support and interventions.

“As a campaigner I would like to see a robust plan which addresses all of the recommendations.”

What people said

. “There has been absolutely no support whatsoever.”

. “I have been in and out of therapy for more than half of my life and I am still trying to find somebody who not only has an understanding of autism, but also knows how autism can affect your mental health, your daily life.”

. “My child has been described as ‘low functioning’ as they are non-speaking, but he is still working at GCSE level in some subjects. It is a very disparaging way to describe a human being.”

. “In an ideal world I would like to get rid of the stigma (around autism).”

Healthwatch’s recommendations

. Easier access to the diagnostic service

. Shorter waiting times for assessments and diagnosis

. More awareness of female autism

. Making sure healthcare staff better understand the needs of autistic people

. Better identification and treatment for autistic people’s mental health problems

. More support after diagnosis to give autistic people help with education, training, work, benefits and independent living

. Clear and up to date information on autism, local services and support – in digital and offline formats.

MP for Peterborough Paul Bristow said: “This is an incredibly helpful report that I hope will be taken on board. Lengthy waits and barriers to assessment are not good enough.

“I am heartened that there are councillors who appreciate this and share my vision that Peterborough should become an autism friendly city.

“Not everyone’s brain works in the same way and its important this is understood. But with the right adjustments and support everyone should be able to thrive within education and at the workplace.

“Let’s end the stigma around autism and ensure everyone is able to reach their potential.”

A spokesperson from the Cambridgeshire and Peterborough Clinical Commissiong Group said: “We recognise the concerns raised in the Autistic Voices Report and are committed to working alongside our providers and voluntary organisations such as Healthwatch to address these within the development of the All Age Autism Strategy.

“Additional funding has been agreed for 21/22 that will help enable the local health and care system to work closer together to enhance autism services and support available for all ages.”

The report can be read in full at: https://www.healthwatchpeterborough.co.uk/news/2021-05-11/autistic-voices-report-will-help-shape-new-autism-strategy-our-area.

To share your views with Healthwatch, visit: https://www.healthwatchpeterborough.co.uk/share-your-views or call 0330 355 1285.