Autism: A Parent's Perspective
As part of Healthwatch Islington's research into health & social care challenges of autism, we met up with one Islington parent, Virginia Bovell, to get her perspective.
Interview by Nicola Baird
Virginia Bovell is mum of Danny, 23, who was diagnosed with autism when he was three. “Because Danny has profound learning difficulties and major health issues, which in turn cause challenging behaviour, he’s eligible for 100 per cent NHS funding – two to one support during waking hours and one to one at night to keep him safe. It’s a lot of support,” says Virginia who lives in Finsbury Park, Islington. “But this is quite rare. Many autistic people need a much lower level of support funded from social services rather than the NHS. Some don’t get nearly enough support – some get none at all.”
Before Danny was born, Virginia was employed by LSE researching community care for adults with learning difficulties and the elderly. “There’s a humour that all my training up until Danny was born was highly relevant to being Danny’s mum. I’d also trained as a teacher, a nurse and a health visitor. And also been involved in policy. Despite all of that I have struggled. And that’s what keeps me awake at night. In theory I was equipped to sail through the system and advocate and get exactly what I wanted for Danny. But what would happen if I didn’t have English as a first language? Or if I didn’t have friends who could help translate bureaucratic jargon? Or if I hadn’t had access to the internet? Or if I was intimidated by all these many professionals? It terrifies me how many people must be in some kind of despair about what to do and how to get the support their children need.,” says Virginia.
The past two decades have seen Virginia dedicate her life to Danny and others with autism. She has helped set up and fundraise for a dedicated school for autistic students, TreeHouse in Haringey, and its umbrella charity Ambitious about Autism, and in 2015 completed a doctorate in autism and ethics at Oxford University.
Here she explains the main health and social care challenges she’s faced.
Q: How do you cope?
“A lot of parents are on anti-depressants, and under huge amounts of stress. One parent said to me ‘It’s not the autism that is my main problem, it’s the fight with the local authority’. But in relative terms the Special Education Needs officers in Islington are very well intentioned compared to some other local authorities. And within the sphere of disability, including autism, Islington is a relatively progressive borough. But it is facing massive cuts.”
Q: What were the baby years like?
“All those developmental milestones put you under pressure. There are percentile charts for all sorts of things. One of the pressures of being autistic, or loving someone autistic, is that from birth onwards there is pressure to be so called normal in so many ways. We get messages we are deficient if we are different from some statistical average.
“In retrospect I could have enjoyed Danny more and worried about him less if I’d been freer of those pressures. It’s a wider social cultural climate which I don’t know how one changes. I’ve learnt to say it’s ‘Good to be different’. You can say it with your intellect, but I feel it more and more. Not only because I think how marvellous Danny is in his profoundly disabled way according to all the measures, but also because it starts to make you notice qualities that people have that may be very unusual which we are not taught to admire. Danny lives in a building with a range of flats for adults with varying learning disabilities and their day-to-day support is provided by Centre 404. All the tenants there have such big personalities. They haven’t got all the tools to conform but that’s a wonderful thing. But it might make them more vulnerable in society.”
Q: What happened when Danny got a diagnosis?
“The whole process of getting a diagnosis is lengthy and quite complex. And then you imagine that the services will swing into action, they don’t. When your child is pre-school age you are told early intervention is really important. You assume with a diagnosis comes wall-to-wall support, but what’s on offer is negligible. We were offered half an hour a week of speech therapy over a four-week period – which made no difference at all. He also attended a good special needs nursery, but unfortunately it wasn’t suited to how Danny learns. In the end we funded a home education programme until he could go to TreeHouse.”
Q: How can GPs make it easier for you and Danny?
“Danny’s GP is brilliant. But hospital out-patient departments, dentists, hairdressers, libraries and gyms all need to make reasonable adjustments if they are going to meet the needs of autistic people. It may mean training the receptionists, having longer appointment times, or somewhere else to sit other than the main waiting area, or organising appointments at the very end of surgery so other people are not waiting in the room.
“Receptionists should not be tutting if someone has a meltdown, but recognising that this person is completely overwhelmed by the situation.”
Q: What about shops?
“Changing the environment to make shops more autism friendly - quieter, with lower lighting would help. I heard that Asda in Manchester has a quiet hour.”
Q: What’s your queue strategy?
“Many autistic people are highly sound-sensitive. The crackle of a sweet wrapper can be offensive to an autistic person. They might cope with a blaring noise but absolutely hate the clack of a computer keyboard. It’s very variable. People usually look at Danny, or hear him, and realise he has special needs. If I say I’m really sorry, could we go first they often let me. It’s much harder for people whose learning difficulty is less obvious.”
Q: What help couldn’t you have done without?
“There are national voluntary organisations that provide advocacy, such as the National Autistic Society, Contact a Family and Ambitious about Autism. Locally, like other parents, I have found Centre 404 to be invaluable, although their SEND (Special Educational Need and Disability) Community Support Service lost the contract with Islington recently to another provider, which was unknown to families in the borough. This has been disruptive to many families. None of them were consulted. It just seems baffling to all of us.
“Centre 404 knows Islington and the issues facing families with autistic and learning disabled members. The practical support, information and advice offered by Centre 404 from diagnosis continues into adulthood (e.g. they now support Danny day-to-day in his flat, and I first accessed their information and advice-type help when he was three).” http://www.centre404.org.uk/
Q: Did you use parent support groups?
“People who have disabled children (whether grown or not) tend to be the best source of advice, information and ideas. Clare Palmer, an Islington resident who was chair of Family Carers Reference Group, has piloted me through the system because her daughter is that bit older than Danny. I think we parents tend to try and help the next cohort coming through. There are also online networks I sometimes used – like the one from Ambitious About Autism (AAA), called Talk About Autism.” https://www.ambitiousaboutautism.org.uk/
Q: Any tips about dealing with the Local Authority?
“The system is structurally set up to be a conflict when budgets are so tight. People don’t go into caring professions because they are turned on by combat, but local authority personnel often end up trying to offer support as low-cost as possible, because of resource constraints. Parents have to fight to get what their child needs. However angry you feel about this, remember that if you are angry at the local authority officers, this isn’t going to warm them to your child’s case. But sometimes parents feel they have no option but to fight.”
Q: How has independent living worked out for Danny?
“There are many different pathways – some people with autism will go to university, but those with profound learning difficulties like Danny may stay with their parents. This wasn’t something that I wanted to happen to Danny because you don’t want your beloved young person to be so emotionally dependent on their parents that it’s an absolute catastrophe when the parents get old and die. I wanted Danny to move away from home, but be nearby, so that he could gradually adapt to new situations, and new people, while still having many years of support from his family.“
Q: Is the pressure off now that Danny is settled?
“I’m not in a battle situation now, but always waiting for the next challenge. What would happen if the Local Authority officers all moved jobs and you got a new set of people who were less sympathetic and collaborative in the way they work? I feel like I can relax for two months at a time. Danny’s key worker is great. He has a wonderful GP. But what happens when they go? Danny won’t be able to advocate for himself. I’ve got Danny’s memory – file notes exist but no one has time to leaf through all these. So I feel we are incredibly lucky at the moment, but I absolutely can’t presume that that will be sustained, though I hope it does.”
Q: How are you feeling?
“Until recently any autistic person in Islington without a learning disability would not be eligible for support. But the Autism Act of 2009 required that local authorities do meet the needs of all autistic people, even if intellectual functioning is average or above. Islington has just set up an Autism Board to try and develop better ways to meet the needs of this group who often struggle to find jobs, housing, friends, vocational training etc. It’s a paradox: sometimes the less able people are the lucky ones. Danny’s health problems – rather than his autism - make him unlucky. Even so he’s capable of great joy.”
If you are autistic, or know someone with autism, you can share your insight and help us all think differently by contacting healthwatchislington.co.uk/autism or call 020 7832 5814. As a bonus everyone who offers feedback will be entered into a prize draw.