We Are Failing Our Autistic Community
I am not autistic.
I am the neurotypical big sister of my little autistic sister, Kirsty. I say little, she’s nearly 30 years old. I have many years of experience working in the community, schools, and hospitals with autistic people — usually with those who have a combined mild, moderate, or severe learning disability. I am a trained, currently non-clinical Occupational Therapist. Kirsty is autistic, she has a severe learning disability and also suffers from epilepsy. She has a voice, yet she’s not always heard and can’t always express what she wants or needs. So I use my voice.
Over the years, I have observed a variety of healthcare and educational professionals interact with Kirsty and the service users I have worked with. And over and over again, I have watched the system fail Kirsty and other autistic people. Why?
We set up autistic people to fail from the start. In schools and other educational institutes, we provide the support needed up until the age of 16 to 18 years old. And then we take it away.
In the UK, children with a range of disabilities are supported with predictable, robust routines in special needs schools. My sister has relied on a predictable routine her entire life, unexpected and unwanted changes to her routine cause her to be uncomfortable, anxious and stressed. This can and has led to aggressive behaviour, which as a family we have supported her with. Several studies have explored the impact of structured routines within the daily life of autistic people, both in educational institutes and at home. Autistic people are known to have a preference for predictability and routine which provides a sense of order. Repetitive and ritualistic behaviours are commonly observed in autistic people and we know that ritualistic behaviours can interfere with participation in functional daily routines. We understand the importance and impact of structured routines in the daily lives of autistic people. Why then, when autistic children transition to adults do we take those supportive routines away?
Kirsty attended 3 special needs schools before she turned 16/17 years old. We prepared her in advance. We utilised supportive tools that are used in the special needs environment — social stories, pictures and boards, countdowns and timers. She also spent 2 years attending a special needs college, which she enjoyed. Similar to the school environment, she was supported with predictable routines and regular faces that she knew. Then, she became an adult and it all went away.
Now the ‘fight’ for supportive services began. Navigating the limited amount of options she was offered to continue learning, working and contributing to society, by being a part of society, we were overwhelmed and disappointed. My parents wanted Kirsty to continue living at home, they would support her with her home needs, yet she deserved the opportunity to continue to learn, work and engage in a social environment like any young adult has the freedom to do. Social services informed us she was entitled to attend a day placement, for 6 hours per day (shorter than the school day) and only 3 days a week. Up until this point, Kirsty had spent 18 years being supported 5 days a week by structured, predictable routines in which healthcare and educational professionals had also instilled into her every day. Suddenly, her daily routines were gone.
She was not equipped for this. She was not taught over her many years in educational environments how to cope with such a dramatic change in her life. Professionals had advised and instilled structured routines into her life because research tells us unexpected changes cause distress, observations show us that structure is needed, and autistic people tell us predictability helps. Why are we setting up autistic people to fail?
I used to work with an autistic boy who had a severe learning disability. He was gentle, kind, inquisitive and beautiful. It saddened me to learn this year that he now lives in a residential home because his behaviour is too aggressive and too violent for his parents to manage at home. His aggressive behaviours started when he left school, his day placements failed and he did not cope with the consequences of the poor support system. His family wants him home. He can’t go home. This is another result of supporting autistic people to rely on routines, without the promise that structured routines will support them for the rest of their lives.
I have so many examples of how structured routines cannot apply in life outside of the school context. I advise that the use of structured routines in schools should be reviewed. We need to start researching how we can teach young autistic people strategies on how to cope with unexpected changes in structured and predictable routines, how to cope with the dramatic changes that are coming their way and teaching schools and other educational institutes that these strategies need to start at a young age.
Let’s stop setting up our autistic communities to fail.
