‘What will happen to our autistic sons when their father and I are gone?’

Like all mums, Rachel Edmonds would love her sons to lead happy, independent lives. But she is painfully aware that two will probably never fly the nest due to their severe autism. In a heart-wrenching essay, she reveals the torment behind the smiles in this family snapshot.

Rachel Edmonds adult autism
Rachel at a wedding last year with (from left) Tom, Sam, Theo and husband Tony.

For most families, a child reaching adulthood is something to celebrate. My eldest son Sam had two 18th birthday parties – one with friends and one with us. We gave him his presents, he spent the day with his friends then we gathered with extended family for a lovely evening full of laughter. He had just finished college, learnt to drive and had his own car, which he and his dad had done up (he’s car mad). Adulthood awaited.

When my middle son Tom turned 18 last October, it was very different. We’d already told him exactly what presents we had bought so that he didn’t have the stress of not knowing what was inside each parcel. He’d chosen a computer monitor and I also got him a fleecy onesie to keep him warm because he’s awake for most of the night. Material things don’t seem to matter to Tom, and though we asked relatives to give him money he still hasn’t spent any of it.

The day itself was a quiet affair. For weeks beforehand, we’d chatted to him about how much we’d like to take him to our local pub for his first official pint. We did manage this for an hour but it totally exhausted him. He spent the next 24 hours sleeping on and off to recover.

Tom is autistic and not in education at the moment. He has only left our house once since Christmas and hasn’t had a shower or changed his clothes for well over a month, so he’s a little bit pongy. When he’s not showering, he sleeps on the floor rather than in his bed – his bedroom is his own little world and he doesn’t like me going in. But Tom’s a gentleman: he’s polite, kind and will always step back and make way or open the door for me. If he sees me struggling with something – a decorating project or on the computer – he’s always encouraging, ‘Come on, you can do it, Mum!’ He seems to have ultimate faith in me.

For Tom, turning 18 didn’t mean ‘flying the nest’ or the next step up. It meant everything got harder than it was already. The little support we had under CAMHS (child and adolescent mental health services) ended. The weekly visits from his psychiatrist stopped and we were given a new social worker from the adult autism team who has visited only once – because adult services are so stretched, only those in crisis can get help.

Unless Tom deteriorates to the point of harm either to himself or others, it looks as though the chances of getting support are slim. I’ve spoken to parents of autistic adults from all over the UK and it’s the same everywhere – we spend all our time fighting for services that don’t exist. When our children become adults, we’re forgotten by the outside world, the professionals stop listening and we’re on our own. And the one question at the back of our minds 24 hours a day, which starts as a whisper then screams at the top of its lungs is, ‘Who will look after our children when we’re gone?’

Though my husband Tony and I never had a plan for how our family might be, this isn’t what anyone imagines when they become parents. We met on holiday in France when I was 17, moved in together when I was 19 and got married when I was 24. Tony was head of sales for a car company. We bought a house, did it up, got one dog, then two – it was a natural progression to have a child. Sam came first and, after four years, Tom. He was such a lovely baby, I thought, ‘Let’s have another!’ Our third son, Theo, was born 18 months later.

Both Tom and Theo are autistic. It took years for them to get an official diagnosis – by then they were in secondary school – but looking back, you can see early signs. As a baby, Theo used to scream the house down. Tom was really easy, but maybe a bit too easy. He was self-absorbed, happy to be left alone and when he started nursery was not capable of playing with other children. He’d bite and attack them and push them out of the way. He couldn’t cope in crowds and hated bright lights. He’d only eat certain foods and wouldn’t eat vegetables – he still won’t.

Rachel Edmonds adult autism
The family on a trip to Mexico in 2004

The school years were day-to-day crisis management for us. Tom and Theo would both run away from school and have meltdowns not unlike those of a two-year-old: triggered by anything or nothing, they involved shouting, smashing and throwing things. These episodes became a lot harder to manage as they got older and it’s difficult to describe the impact when they happen now. At first, I’m in the moment, trying to deal with it; maybe holding my son down or leaving the room – sometimes the house – for my own safety. Then afterwards I’ll feel exhausted with a tiredness I’ve never experienced before. There’s sadness for both yourself and your child, mingled with the awareness that I could have been hurt or how it could have been worse. I’m walking on eggshells for days afterwards and repairing anything that got broken.

Theo is 17 now and I worry about him less. He’s more independent than Tom, has fewer meltdowns and keeps trying – he loves building computers and we’re looking for the right college course for him. I hope that one day, if he could find the right company, he could get a job and do really well.

Tom is more challenging. Although he’s very intelligent – he could do anything if he wanted to – he has no qualifications. After he refused to go to school (or even see teachers when they came to our house) his education faded away. His psychiatrist thinks he has pathological demand avoidance, which means that any demand at all – even ‘could you brush your teeth?’ – causes very severe anxiety and means he just wants to avoid it. Instead he retreats into his own little world.

Tony and I gave up on long-term goals years ago, but then we started hitting milestones such as when they should be doing GCSEs or A-levels, going to university or having a girlfriend. You remember what you were doing at that age and how it felt to start driving, go on holiday with friends or earn your own wage. Sometimes, I’ll be watching a soppy family drama on television and realise that tears are falling because I’ve allowed myself to think about what could have been.

Worse is the fear of a future without us. The closer I’ve got to 50, the more stories I’ve heard and the more people I’ve lost. Recently, a very dear friend died suddenly. My mum died from a brain haemorrhage when I was 11. My brother died in a car accident when I was 21. I’m thinking about it more and more. My first thought in the morning and my last thought before I go to bed is, ‘What would happen if I wasn’t here?’

Right now, without our family, Tom would starve – he wouldn’t leave the house. Maybe he’d work out how to order food online, but that would involve going to the front door to take the food from a stranger, which he wouldn’t do. The truth is that Sam, now 22, will one day be Tom’s carer.

We haven’t talked about it in depth but he’s very aware of it. His attitude is that it’s a fact of life and he just gets on with it. He’s almost the third parent already. When Tom was under CAMHS, Sam would sometimes join me at the meetings if Tony was working. If Tony and I try getting Tom out of bed without success, Sam has a go and sometimes it works. Sam has blossomed into a lovely young man – laid-back, funny and brilliant with his  brothers. I want him to fall in love, travel the world and have adventures. But he knows that one day he’ll be parenting his brother. Why should he?

Hopefully, I have years to come with all my boys. Life for us has always been about making the most of things. I’m lucky that Tony and I are soulmates – even on bad days, we couldn’t imagine being without each other, and I think we’ve passed that togetherness down to our sons. We’re very close, we laugh a lot and I love my family. This isn’t a sob story. I just want to shout out loud that the system is not working. Our adult children need support.

Adult autism: who cares?

Anna Moore outlines the facts and the failings.

Autism affects more than one in 100 people – over 700,000 people in the UK are autistic. If someone on the autism spectrum reaches the age of 18 and still needs care, either they or their parent can ask for an assessment by adult social care services.

If they are already under the child and adolescent mental health services, they will be assessed by adult mental health services to decide whether they are eligible for ongoing support.

Support options might include respite care, day-centre provision, educational support, counselling or therapy. For some autistic adults, there might be supported living schemes or residential care with 24-hour staffing. However, many councils set very high eligibility thresholds and research shows that 70 per cent of autistic adults say they are not getting the help they need.

According to the National Autistic Society, one in three autistic adults have severe
mental health difficulties due to lack of support. Only 16 per cent of autistic adults
in the UK are in full-time paid employment and only 32 per cent are in any kind of paid work.

Autistic people are four times as likely to be lonely as the general population, and 79 per cent feel socially isolated. For more information, contact the National Autistic Society at autism.org.uk or call 0808 800 4104.

For more on Rachel’s experiences with raising autistic children, visit her blog at raspberryflavouredwindows.com

As told to Anna Moore