Parents of children on the autistic spectrum struggle with long frustrating diagnostic processes and are often met with misunderstanding and hostility from other mums and health and education professionals. As part of last week’s World Autism Awareness event, Caroline Thain spoke to three key members of the St Albans ‘autism community’ to get the inside story.
Anne Ross, 60, lives in Oaklands Lane, St Albans. She is director of ADD-Vance – a charity she set up 20 years ago when her son was six years old. She has a wealth of insight into what local families living with autism and ADHD need.
ADD-Vance supports parents, provides training and consultancy to professionals and receives no statutory funding. It fundraises and relies on grants to offer telephone help, groups and coaching in the home – most of which is free to families.
Anne, whose son has autism and ADHD, said: “There is never enough service to meet demand in this area. It’s hard to get an assessment; it takes time on a waiting list and then a series of appointments for the diagnosis. In the meantime, families struggle with very little help because the child is often seen as a ‘problem’ because the parents need training. This isn’t the true picture.
“We know families face a lot of discrimination from other parents and family members who think they have solutions and tell the parents what they should be doing without realising children with autism need different strategies and understanding.
“All behavior has a reason. When the child has autism it’s often associated with sensory issues and social communication difficulties. Adults and peers may find them difficult to communicate with but it’s like speaking the wrong language. If you speak their language, they can hear and respond. Generally if you give them time to process information, they will respond.”
She explained how St Albans’ parents are viewed as ‘demanding’ and acknowledges parents often know more about their children than professionals. Anne calls for closer cooperation between families and professionals and seeks to improve isolation.
Gaye Allcock, 38, from Coach Mews, St Albans, runs a Lego club for children with autism and special needs. Her son James, ten, has Asperger’s and was diagnosed aged three.
Autism can pose a conundrum with schooling and meeting other parents who understand has been beneficial.
She said: “It’s really nice to talk and have a rant about school and family. I took my son out of mainstream school for seven months and now he is at a special school, which really turned things around.
“There are no schools for high functioning autistic kids. A lot of the schools are moderate learning disability schools. I was told James wouldn’t get in. Luckily, he has a complex profile so we managed to get him in. But I know many parents in St Albans who’ve taken their kids out of school and are fighting.
“You have to convince a panel. They read the reports without you there and make the decision. If it is declined, you have to go to a tribunal, paying for a solicitor and getting other people to do reports. It’s an ongoing battle.
“You can have children at home, sitting in their room with no school for months. Then comes the depression, self-harming and some kids are in mainstream school feeling suicidal.”
James - whose Samoyed dog Nigel is a great companion - has been at St Luke’s School in Crouch Hall Lane, Redbourn, for four weeks.
Gaye added: “He’s so happy and confident. The school is amazing. They have animals the kids can feed. The pressure is off. They look at what the child’s good at and encourage that. It’s lovely. He had his school photo taken and it’s the only one I’ve ever bought because he’s smiling.
“Parents with neuro-typical children haven’t a clue. They live in a society of tennis training and football coaching. They don’t realise what a personal struggle it is. You don’t plan to have a child with autism. It’s very difficult and at times, rewarding - a different life.
“They need to be inclusive; come off their high horses and not make judgements. Next time they write party invites, invite the child with autism. They don’t need more pushing out. They’re battling all the time - probably had no sleep and need to be accepted as if it’s normal somehow. The perception of autism must be changed.”
Steph Curtis, 43, of The Ridgeway, St Albans, began her blog six years ago to spread awareness of autism spectrum disorder and pathological demand avoidance (PDA) – a specific type of autism her eight-year-old daughter Sasha has. Steph also runs PDA courses to support families in similar situations.
She said: “Parent support groups are a lifeline to many families after diagnosis. That’s how the best information is passed on when you’re left to ‘fend for yourselves’. We were sent away with little information. I spent a good year reading books and perusing the Internet.
“I came across PDA and knew the description fitted Sasha perfectly. To keep Sasha in school they have to be very flexible with her. A child with PDA suffers extreme anxiety when faced with everyday demands, which can make mainstream school, and conforming in a whole class, tricky. Luckily, our girl is allowed plenty of sensory breaks to alleviate this anxiety and all staff use PDA strategies, which have proven successful for her.”
However, Steph worries about what will happen at secondary school and fears children who don’t know Sasha will not understand her needs. She also suggests a lack of suitable secondary provision in Hertfordshire compounds these worries. Her blog can be found here.
Do you need help?
If you think your child has an autism spectrum disorder, you can access a referral for an assessment through your GP.
If you have concerns about your pre-school child, you could try speaking to a health visitor. If your child is at school, you could consider raising it with the class teacher or school nurse.
Parents say they sometimes prefer to deal with professionals or volunteers who specifically understand autism - right from when they first suspect a diagnosis - because the responses among health and education professionals are variable. Support groups and other autism organisations can help you find out more.
If your child has been diagnosed and you feel you are not getting the help you require at school and/or at home, you can get further information by contacting a local support service or by calling a helpline.
Local support
Lego club in St Albans - The Facebook page can be found by searching ‘St Albans Lego club for children with autism/special needs’. Held at Fleetville Community Centre, Royal Road, St Albans, on alternate Saturdays between 4pm and 5.30pm. The next one is on April 23.
Dance class for children with SEN - A Wednesday dance class is held at St Albans Dance Academy, Russet Drive.
DJ’s Jungle Adventure, St Albans Road, has additional needs sessions on the first Sunday of each month (4pm-6pm).
ADD-Vance is a charity based in Hatfield, which helps families and professionals who care for children with autism and ADHD. Provides support groups, training, coaching and events.
Spectrum Girls is a Herts-based group, and a sub-group of ADD-Vance for females.
SEN support group ‘SAMCAA (St Albans Mums of Children with Autism and ADHD)’ connects mums on Facebook and for daytime coffee or evening drinks. Run by Sarah Hayden, it helps parents and children make friends.
For information on PDA.
See the National Autistic Society website or for their telephone helpline, call 0808 800 4104.
The A Word
BBC drama ‘The A Word’ has received critical acclaim from those with a special interest in autism spectrum disorders. How does it compare to the experiences of St Albans’ parents?
Gaye Allcock, Lego club founder and mum to James, ten, said: “While it’s good to see things aired on television to give us more information on autism, a rule everyone should live by is: if you’ve seen one child with autism, you’ve seen one child with autism. The way he is very much in his own world and how kids deal with not having to socialise by becoming into computers is true for me. The mum and dad arguing was particularly good too – the way it puts stress on the whole family. And the way she’s not accepting it and the grief you go through was portrayed well too.”
Steph Curtis, who writes an autism awareness blog and runs PDA groups and mum to Sasha, eight, said: “We were sent away from the paediatrician with almost no information and had to do our own research through books and online, so that was very much like the mum in ‘The A Word’. Parties have been difficult – both attending and her own – and just like Joe in the programme, she’s not fond of having Happy Birthday sung to her. From what I saw, among many people with connections to autism, the majority of feedback was positive.”
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