Scottish Government attempts to draw up policies on autism have treated autistic people “appallingly” and suffer from “well-intentioned ignorance” and “prejudice”, The Ferret has been told.

A recent government “engagement exercise” on autism policy was criticised by autistic people’s organisations for not being fully accessible to autistic people and partially excluding them.

Government officials have accepted that there have been problems, and apologised. They are now trying to work out new arrangements for developing autism policies.

Autism affects how people perceive the world and interact with others. Autistic people’s experiences of autism varies widely between individuals, partly depending on where they are on the autistic spectrum. There are estimated to be around 50,000 people in Scotland on the autistic spectrum.

Autism Network Scotland (ANS), which is funded by the Scottish Government, aims to be a hub for autistic people and professionals. Based at the University of Strathclyde, it has been singled out for criticism.

One former member of the ANS governance group, Michael Dawson, accused officials of failing to understand those on the autistic spectrum. “When it comes to dealing with autistic people and allowing autistic people to work as equals, there’s still an underlying prejudice towards us amongst the people who work in what I’ve come to term the autism industry,” he said.

This is not because they are deliberately trying to hold autistic people back, he argued. Rather, it was due to “well-intentioned ignorance” on the part of civil servants, professionals and autism experts.

According to Dawson, through delivering services many professionals are used to working with autistic individuals on the more severe end of the autistic spectrum. “That kind of image sticks, so it’s always the classic autistic person who can’t manage themselves and needs a lot of help,” he said.

“It’s an old paradigm of autistic people. It’s ignorance of the whole spectrum of autistic people.”

Donna, an autistic woman active in Scotland who did not want her real name to be used, was scathing about ANS. “Part of what ANS is supposed to be doing is engaging with autistic people  – so they say,” she said.

“They are in fact acting as a barrier to autistic people’s involvement. Since they have been in place under their new name, they have distanced themselves from autistic people. They obviously feel superior and expert. They treat us appallingly.”

They obviously feel superior and expert. They treat us appallingly. Donna

In October and November 2017, ANS administered an engagement exercise aiming to capture people’s views on the government’s autism strategy. This consisted of an online survey and four live engagement events in Edinburgh, Glasgow, Aberdeen and Inverness.

An autistic-led group called Autistic Mutual Aid Society Edinburgh (AMASE) said in an open letter that they had “some serious concerns” about the way the exercise has been conducted “particularly in its accessibility and efforts to include autistic people”.

Sonny Hallett, chair of AMASE, told The Ferret: “It’s really important that autistic people and our lived experiences are listened to. You wouldn’t have a consultation on trans policy without trans people being involved so the same should apply to autistic people and autism policy.”

One of AMASE’s criticisms was that autistic people’s organisations were not involved in the planning of live events and that the venue for the Edinburgh event had bright lighting, loud acoustics and steps, making it difficult for autistic people to take part.

Annette Pyle, team leader on autism policy at the Scottish Government’s health and social care integration directorate, acknowledged AMASE’s criticisms and apologised. “The consultation venues were largely chosen in consultation with colleagues locally considering what was reasonable, available, accessible and affordable,” she said.

“The Edinburgh consultation in Walpole Hall was offered by Edinburgh City Council as a venue they use for a number of public consultation events…In our experience, what individuals look for in venues can vary and it is difficult to take everyone’s preferences into account.”

Pyle’s line manager and strategic lead for autism, Gillian Barclay, pointed out that there was not a “huge selection” of venues with capacity for up to 70 people which met all aspects of accessibility. “We wanted to ensure as many people as possible could attend the engagement events,” she said.

“For those who were not able to attend these events for any reason we invited views online, by letter or email to ensure we did not exclude anybody from the opportunity to give us their views.”

In our experience, what individuals look for in venues can vary and it is difficult to take everyone's preferences into account. Annette Pyle, Scottish Government

Another of AMASE’s criticisms was that no record was kept of how many autistic people took part in the engagement exercise, either online or at the live events. But Barclay stressed the difficulties that presented.

She said: “We respect the rights of people to privacy, disclosure of a condition is a voluntary act. We did ask people at the Edinburgh event to tell us if they were autistic – but some people were upset by this approach so we did not attempt to try it again.”

AMASE’s Hallett told The Ferret that autistic people and their families were treated as one group rather than as two largely distinct demographics. While the views of family members were important, Hallett said, they cannot speak for autistic people’s lived experience unless they are also autistic themselves.

Instead of joint sessions, AMASE has suggested that “specific consultations aimed at autistic individuals may work better than consulting with parents, carers and autistic adults as one group.”

However, Barclay said that the government did not have the resources for this. She added: “This was not a formal consultation but an engagement exercise as no new legislation or policy was being developed and our budget for this exercise was limited to the online questions, responses by email and the four public engagement events.”

Another problem with the engagement exercise was that the online questions were regarded as too open-ended and imprecise for many autistic people. According to the government’s own analysis of the exercise, respondents had suggested that “a survey-type questionnaire might have been more appropriate, or that questions could have been vetted for clarity and understanding by individuals on the autism spectrum.”

According to Hallett, the engagement exercise was not the only flawed event that the Scottish Government has run. There were also said to be problems with the last Scottish strategy for autism annual conference.

“The chosen venue was very loud.” Hallett said, “Signage was poor, communication badges were included but their use not communicated to the delegates, and crucially no autistic people were included as any of the invited speakers.”

The event was held at the Edinburgh International Conference Centre, which had previously come under fire for being inaccessible or challenging for those with sensory difficulties during an Autism Europe Conference in 2016. “I am told by delegates who have been to previous annual conferences, which were run by ANS, that they were very similar,” Hallet added.

What we found was they wanted to control us rather than treating us as equals. Michael Dawson

ANS has also been accused of trying to control autistic members of its governance group. “That was a frustrating process,” said Dawson, who was on the group in 2014.

“What we found was they wanted to control us rather than treating us as equals. Our focus was wider engagement with the autistic community and parents and carers community,” he added.

“We agreed that we would work with ANS to achieve this, but not for ANS or under their control. Thus the battle between us and ANS ensued.”

ANS and the Scottish Government are now working out new arrangements, which have not yet been finalised. According to the government’s Gillian Barclay, the current plan was to have an autism policy review group.

The group will be chaired by Scottish Government, and will hold meetings on specific topics around the country. The government intends to invite local representation from autistic people to each meeting, with a minimum of two autistic people invited to each meeting.

But Dawson predicted there would be hitches. “Do they know who to invite? It’s again putting the autism community at the mercy of their invitation.”

The Scottish Government insisted that it had “engaged widely” with the autistic community when developing its strategy. “More than 1,260 people took the opportunity to share their experiences, concerns and hopes, and their input was vitally important,” said a spokesperson.

“We had very positive discussions with more than 600 people who attended our engagement events, while another 660 people participated through our online questionnaire. By offering both methods and holding events across Scotland, we aimed to ensure as many people as possible could participate.”

“We asked all attendees to inform us of their needs in advance and chose venues that best catered to those within what was available and accessible in each area. We welcome feedback that helps us make sure future activity is as fully inclusive as possible,” the government spokesperson added.

“Understanding how many people we engaged with have personal experience of autism is not straightforward since people have a perfect right not to discuss what they might consider to be personal information.”

This story was suggested by one of The Ferret’s readers. If you want to suggest an issue of public interest for us to investigate, please get in touch.

The cover image for this story was changed on 13 September 2018 at the request of one of those quoted.