Time for an adult conversation about autism

Last Friday's Late Late Show touched a nerve for many members of the autism community. Maeve Higgins, a usually very witty and brilliant comedian, described to Ryan Tubridy how she had recently masqueraded as a disabled person in order to get her dog on board a flight, under the auspices of being an assistance dog. (Higgins points out that the regulations for the US and Ireland are different and she has the correct paperwork for an emotional support dog. She apologised on Twitter to anyone hurt or offended by her routine, adding: "Much love and respect for people who need, fundraise for and train service dogs and thank you for the information! Will do better.")

Given the hard fight for recognition and support of these dogs, and most other supports, our community found it hard to understand the national broadcaster providing a platform for such behaviour and not even challenging it.

However, it got me thinking about a much bigger issue – how the needs of autistic people are understood and met by adult society.

No two autistic people are the same

Autism is a developmental condition which affects how a person communicates with and relates to other people and how they experience the world around them. Put simply – autistic people experience the world in a different way to most people. No two autistic people are the same – some live independently, others require high levels of support in day to day life.

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Some, like me, are fortunate to be included and accepted – others are left behind.

Until relatively recently, segregation was the norm. Autistic children, from the moment of diagnosis, were separated from our neurotypical peers and sent to special school. Around the turn of the century things began to change and since the Education of Persons with Special Educational Needs Act was passed in 2004, inclusive education is to be favoured.

Today, 1 in 65 students in the schools system have a diagnosis of autism and 86 per cent of autistic students attend the same schools as everyone else.

As a direct beneficiary of this shift in thinking, I am a major supporter of inclusion and “mainstreaming” yet I feel it is something which we have undertaken in a remarkably Irish way.

That is to say, we will do this, but we really shouldn’t talk about it. It might be awkward. It might be uncomfortable.

Who knows, we might even offend someone.

The consequence is that we have thousands of autistic people growing up in communities which have never been properly equipped to meaningfully understand, accept and include autistic people and the different, equally valid way in which we perceive the world. “Growing up” being the elephant in the room. When we talk about autism the image in our mind is often that of a child. When we are asked to think about including an autistic person, we immediately think about school. However autism is a lifelong, invisible condition. Autistic children become autistic adults and, as the first generation of mainstreamed students grow up, we need to start having “an adult conversation” around autism.

If there is much work still to be done in building a truly inclusive education system, the barriers to inclusion in the adult world remain largely unaddressed. “Accessibility” is a team we are all familiar with however sometimes our understanding of it is limited to physical access. Autistic people face access barriers in communication, predicting social situation and in the sensory environment. 80 per cent of autistic adults are either under-employed or unemployed. An autistic person is 28 times more likely to consider or attempt suicide than those who are not on the autism spectrum. A lack of structure to the day, overwhelming sensory environments and a lack of understanding by members of the public, can lead many autistic adults to experience social isolation.

These facts are disheartening but they are also not inevitable. Unemployment, suicidal ideation and social exclusion do not form part of the diagnostic criteria for autism. They are the bi-products of how our society responds to adults who think and experience the world differently.

This issues stems from attitudes and perceptions. We all want our schools to be inclusive and for children to play with all children. However do we hold ourselves to the same standards in the adult world?

How many people will dodge the slightly “eccentric” person if we they see them in the supermarket?

How many interview panels will hire someone who doesn’t make eye contact and struggles to answer abstract questions?

How many businesses or public services will misinterpret autistic behaviours as bad manners, customers being difficult or suspicious behaviour?

Changing attitudes in the adult world is vitally important for the wellbeing of the autism community, however this is not about charity or corporate social responsibility. There is an enormous social cost to exclusion. We have people, today, in receipt of disability or jobseekers allowance who desperately want to work but who are declined to the opportunity do so. We have people requiring mental health supports or struggling with addiction because society does not enable the person to enjoy the same social and leisure opportunities as other citizens.

Every day I meet individuals and organisations . . . committed to ensuring they are autism-friendly

Perhaps most frustratingly, we have a loss of brilliance! During the recession we heard constantly of the importance of “innovation” and “creativity” and yet a cohort of people in society who think remarkably differently and who have skills and talents of their own, are disabled from contributing to society.

I do not believe any of this is deliberate. Every day I meet individuals and organisations, as diverse as retailers like Supervalu and Universities like DCU, committed to ensuring they are autism-friendly.

Instinctively, Irish people don’t want to exclude. However a sea change in attitude is required to address the human, social and economic cost of accidental exclusion.

This requires all of us to take responsibility for the commitment to mainstream by educating ourselves and considering our own behaviour. Do we communicate clearly? Do we respect those who communicate without speaking? Are we patient when people need time to process their surroundings or engage in social situations? Do we respect when people need space, can find environments overwhelming or behave in an unusual way?

It requires a commitment by the private sector to employ autistic people and to ensure the services they provide are accessible for autistic people. It also means a real recognition by the State that autism doesn’t disappear at 16 or even 18 and for appropriate services to be resourced or created that enable autistic people - in further or higher education, in employment and in the local community.

In short, it means all of us showing leadership and not presuming that autism is a matter for someone else. If we decide to do this, we will truly and meaningfully mainstream autism.

[ founder of charity AsIAm ]