Nick’s story: life with Alex who has autism

Alex is twenty-two and autistic. He has severe learning difficulties, anxiety, challenging and self-injurious behaviour and epilepsy.

Tell us what it is like to live with Alex?

When Alex is calm and settled he can laugh and be very cheeky. His communication is limited which is difficult as he is very sensitive. It’s hard for us to work out what is wrong or what he needs; what he is feeling or thinking, or indeed, whether he may actually be in pain.

What is it like raising a family that includes a son with such significant needs?

It has been extremely challenging for all of us. Alex lived with us for the first twelve years of his life, but due to the unbearable physical and emotional toll his behaviours had on us as parents and his siblings, we allowed him to go to a specialist residential school. This was one of the hardest decisions of our life. There was no local provision, so he was a long way from us. I will never forget the sense of extreme guilt I felt. As a dad, I was meant to be the protector of the family and there I was handing my precious son to someone else to care for – but I knew my wife and I were totally exhausted. We had two other sons who also needed us.

Alex is living back at home with you now. What happened?

Sadly, over a period of three years, this placement and another at a different school failed due to inadequate care. In 2015, Alex came back home to live with us with a package of ‘care support’ in place. That also unfortunately failed. In 2016 I gave up my career in insurance to be his full-time carer.

That must have been a huge disappointment and complete change for you. Can you tell us a bit more?

There is so much I could say about my daily thoughts and experiences but I’ll just share a couple of things that are a constant challenge to me, particularly as a dad.

Being Alex’s carer is very isolating. I went from meeting lots of people every day to spending long periods at home with Alex who needs close supervision. That loss of daily contact with people has been really tough. I don’t mind my own company but I thrive when I am with people. Also, losing the respect I gained as a senior member of a successful company – having once been someone who people turned to for advice and help – left a huge void. It felt as if I had lost a significant part of my identity.

I often feel like I am in my own bubble. I have good, sympathetic male friends, however their lives and concerns are now so different from mine. Often the things I go through with Alex, whether practical or emotional, are way outside their experience. When we get together my friends talk about office politics, unreasonable workloads, unrealistic deadlines or the success and failures of their projects at work. In the back of my mind what really concerns me is, what’s going to happen to Alex when I die. Our lives could not be more different. I cannot expect them to understand.

What does a day look like for you now?

I’m a person who likes to organise and have a plan for each day. I now realise, having been at home full time with Alex for so long, that I find it really difficult when things go wrong or plans don’t work out.

Let me explain: my son has endless obsessions and long rituals which he must follow for virtually every daily task. Dressing, bathing, going in the car, going to the toilet, cleaning teeth, everything can take a very long time to complete. Routines that would take you seconds or minutes can take Alex hours, and may not happen at all if his mood is not right. I try hard not to let it frustrate me but I have been known to get cross. Then you’ll hear my wife exclaiming: ‘Calm down you’re making Alex worse’ or ‘Please just get out of the way and let me take over. I can’t deal with another child’ (meaning me).

I have had to learn to set realistic goals and be flexible to decide what is important and what can wait. I try to enjoy what has been achieved rather than lament what hasn’t; otherwise I’ll be constantly frustrated, wind up my son and wife, and miss out on the few good things that have happened.

How do you keep going?

Only by the grace of God. We are a Christian family and have come this far knowing that God is close to us in each moment. We also trust that He is one big step ahead of us, sorting our tomorrow. My faith gives me the strength for each day and hope for the future.

Thank you for sharing your story, Nick. I have the greatest respect for you and your wife and am truly humbled.