I see you: what it means to care for an autistic young person
I see you.
Having lunch in Morrison’s café with your grown-up child who is navigating those independent living skills of being out in the community. Whether it’s being able to choose lunch, being able to order, being able to pay, being able to find a table, being able to sit at a table, being able to wait until the food arrives - and so much more. All of those “being able to’s”, seemingly so tiny and taken for granted, but which can be huge and vital incremental steps towards independence for your grown-up child.
I see you.
Having lunch in Morrison’s cafe with your grown-up child, carefully and oh-so-subtly micro-managing their “being able to’s” week after week. Trying not to judge or be hurt by the ‘looks’ of others wondering why your grown-up child is talking so loudly, unable to sit at a table without stimming or pacing, asking you child-like questions for a 6ft, 23-year-old. Sometimes you ignore the attention and other times you meet their looks face on, which results in them turning away or, ever so occasionally, receiving a flicker of understanding. Then there are the cafe staff who have come to acknowledge and understand the reasons for your regular custom, staff who you may need to rely on if your grown-up child ever needs a familiar, safe space to go on their own.
I see you.
Because I see me doing the same. Just trying our very best to equip our grown-up children with independent living skills, even though you aren’t sure if they’ll ever be able to live independently. So, in the meantime, we organise plan B, plan C and all the way to Z and beyond to find safe spaces for our young people to be themselves, be accepted and be acknowledged. This gives us a little piece of reassurance that when we, as their carers, are not with them and they need to rely on themselves and the kindness of strangers, that they will be okay.
And sometimes we see each other and recognise the shared history that we have as carers, battle-weary after years of fighting for statements/ Education, Health and Care (EHC) plans, assessments, support, therapy for our young people. And in those precious moments that we see each other, I no longer feel so alone.
What it means to look after an autistic young person
I have written this from my perspective of being a carer for my autistic young person who, at 23 years old, has now left education and needs help and support to create a life and routine for themselves.
My young person works two days a week for a company who have been understanding of his needs and made reasonable adjustments which is amazing because, being able to work and earn their own money is very important for my young person as it makes them feel like an adult. They are able to work two days a week as they have five days off to recover from working nine hour shifts however these five days off need to include meaningful activity which is where, as their carer, I need to provide support and try to equip them with life and social skills. This is why I have only ever been able to work part time, so that I am around for my young person when they need support.
My young person has other learning differences along with their autism and struggles with socialising so doesn’t have any friends. This means that I am their financial manager, therapist, friend, taxi driver, PA for all those ‘adulting’ tasks of making sure they are wearing clean clothes, shoes that fit them and don’t have holes in, avoiding eating mouldy food, making and attending dentist/GP/barber appointments - the list goes on!
I am desperately proud of my young person’s achievements and beyond delighted with the life and routine we have managed to organise in their life, but it can come at a cost to the carer in terms of physical, financial and emotional health. I am on high alert every time my young person is not in my company, even if they are with a registered and accredited support worker.
It’s a challenge when your young person leaves the education system and the local authority ceases to maintain their EHC plan as their next steps can seem like a huge unknown into a black hole, perhaps going into battle with adult services for social care, support and respite.
However, for me, the ultimate challenge and ever-present fear is what will happen to my young person when I am unable to provide the support they need. I know that this is a challenge that faces every parent carer, but with an autistic young person, the support needs to be there for my grown-up child when I am not. I know personally that is a weighty fear, so I hope that Carers Week highlights the need for understanding and for acknowledging carers who are living with this fear every single day.
About the author
Nicky is a parent and carer to her autistic young person and a member of Talk about Autism.
