Rafed English

My son has Autism

Deborah Packenham, from Barnet, has three children. Her youngest son, Johnny, 11, has autism. She describes her experience of caring for him.

“Johnny is my third child and he wasn’t like the other two. He was much more aggressive. He never pointed the way babies do to make themselves understood. He slept very little and he used to bite all the time.

“In the back of my mind, I thought something wasn't quite right. When he was two and a half, I went to my GP who knew a little bit about autism and agreed to refer us. The waiting time to see a consultant was about a year and a half so I decided to go privately. After some tests, the consultant diagnosed autism.”

Getting a carer’s assessment

A year after Johnny’s diagnosis, Deborah met someone from Mencap who recommended she get a carer’s assessment. She applied for one and as a result she now receives help from social services.

“Johnny only sleeps about four hours a night and not necessarily in one block. When he was much younger that was exhausting. I was desperate for some help.

“I was quite fortunate as I only had to wait nine months for some respite care after applying for the assessment.

“Through a local organisation called Barnet Link I was provided with a carer who would take Johnny once a month overnight.

“Unfortunately, after a couple of months that carer couldn’t carry on, so social services suggested I switch to direct payments. This meant that I would receive a monthly payment from them and I could employ someone of my choosing whom Johnny and I both felt comfortable with to provide some respite care. My local authority provided advice on obtaining an Enhanced Criminal Records Bureau (CRB) check and also on setting up the online payroll system with HMRC. I then managed to find a nurse to cover the 28 hours a month that I’m entitled to. She comes and picks up Johnny once a month on Saturday morning and brings him back on Sunday afternoon.

“Another local organisation called Barnet Carers provided me with help for an hour a day so I could go and collect my daughter Myfanwy from primary school. Johnny hated leaving the house. He wouldn’t walk, he’d fight with me when I put him in the buggy. It was just so difficult trying to get him out.

“I really appreciated that one hour a day to have a few moments with my daughter. It was very tough on her. Johnny didn’t like having people he didn’t know around the house. This meant that Myfanwy couldn’t easily invite her friends round. She ended up not being invited round to other people's houses and became socially isolated.

“It’s got a bit easier now they’re both a bit older. Myfanwy tends to go out more with her friends and Johnny accepts the friends that he’s known for some time. He doesn’t interact with them, but he tolerates them.

“I still have the one hour a day, but I use it in a different way now that my daughter’s older. It covers the time between when Johnny gets home from school and I get in from work.”

Meeting other parents and carers

Deborah says that meeting other people in a similar situation has been very helpful.

“When I moved to Barnet I joined the local branch of The National Autistic Society (NAS). We have a meeting once a month that is open to any family member. We usually try to get a speaker along, for example someone from benefits or education or a carers service to give people information.

“You can feel quite isolated because you’re stuck at home with the person you’re caring for. Meeting other people who’ve been through the same thing makes you realise you’re not alone. You can share experiences and strategies.

“Our particular branch has started to run a weekly youth club for teenagers with autism and their siblings. We hire part of the YMCA facilities and the kids just do regular things that teenagers do. They listen to music, play pool and go to the gym. It also gives their parents a couple of hours off because we have paid members of staff there to supervise.”

The future

“At the moment, Johnny’s very anxious because he’s going to transfer to secondary school in the autumn.

“I really don’t know what the future holds for him. I hope he’ll be fairly independent and that’s what I’m working towards.”

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