Repost – Why slowly but surely, autism has become an accepted part of our family life by Anna White

A couple of weeks ago I met Anna. A local mum, new to the area and with a newly diagnosed autistic son. Anna had reached out on social media to find local children like her boy (train mad and outdoor loving), and someone put us in touch. We met without the children and just talked. After that first meet up, came another. We chatted for hours! She told me she was writing this article and asked if she could talk about me in it. I was so honoured.

If you have the patience to get past the (albeit free) Telegraph paywall, you can read the original article here. But in case you can’t, here is Anna’s article on her first steps to becoming a Autism Mama.

 

Why slowly but surely, autism has become an accepted part of our family life.

By Anna White 23rd March 2018

All in it together: Anna White with her autistic son Benny, five, his twin sister Agatha, and Alex, aged one CREDIT: HEATHCLIFF O’MALLEY FOR THE TELEGRAPH

“My new friend Benny can’t see me,” said five-year-old George about my son in their first term of reception. Benny isn’t visually impaired; he’s autistic. Although he accepted George into his space and played alongside him, he never made eye contact or responded to him. George moved on – it wasn’t much of a friendship.

Benny is chatty and sunny at home, but when he walks through the school gate an invisible force field suddenly shrouds my little superhero, protecting him from the swarming crowds of children.

It’s not impenetrable. His teachers have broken through, particularly his favourite, Mrs Rowland. He approaches older kids and happily races with his twin all the way to school and back again. But in the classroom and playground, and without adult support, he struggles to conform or participate in group activities. Why?

Because for Benny and many other children with autism spectrum disorder (ASD), environment is everything. A large proportion of ASD kids struggle to process everyday sensory information. To concentrate or hold a conversation we can filter out background noise, ambient light, intense colour. They can’t do this. Every room is louder, brighter, busier, which can result in over-excitement, withdrawal, anxiety or confusion.

‘Benny, 5, is chatty and sunny at home, but when he walks through the school gate an invisible force field suddenly shrouds him’, says Anna CREDIT: HEATHCLIFF O’MALLEY

A quote on the National Autistic Society website sums it up: “If I get sensory overload then I just shut down; you get what’s known as fragmentation… it’s weird, like being tuned into 40 TV channels.” Hence noisy toddler groups, busy restaurants or a free-flow reception classroom can trigger challenging and isolating behaviour.

Concerned about Benny’s isolation from his peers, and being new to the area, I took to Facebook to find him a friend. On the school parents’ page I wrote: “Strange post: my little boy in reception is autistic. He’s calm and communicative at home and plays normally with his twin [sister, Aggy], but is struggling to make friends at school. Does anyone have a child who is quiet, loves trains and messing about in the garden who could also do with a pal? I’d love to host a play date.”

I was inundated with replies from parents of both typically developing children and autistic kids, and some offering to set us up with their friends in the same boat. This showed me that as an ASD family we are not alone. There are other children on the spectrum living on the next road and in the next class, avoiding the same soft-play centres and missing out on the same parties. In fact, there are 700,000 people in the UK with ASD and 2.8 million with a family member on the spectrum. With so many of us in the same situation, it’s surprising how many of us feel alone.

Journalist Jessie Hewitson’s little boy is now seven, but she admits that in the early days she too felt cut off. “I couldn’t meet my NCT group as it became too painful. Mine was always the child that was crying or unhappy and I couldn’t make things better,” she says. “I became detached from friends, as I didn’t have the language to describe what was happening – and for the first couple of years I didn’t know what was happening.

‘We have a train set in the attic and downstairs so he can play in our midst or escape the busy family scene’ CREDIT: HEATHCLIFF O’MALLEY

“When I did confide fears to friends or my family I was often reassured that my son was “normal”, but this just isolated me further. I just wanted someone to take my concerns seriously, but people who care try to reassure you, shutting conversations down and making you feel like you are over-anxious or somehow viewing your child negatively.”

On Thursday, Hewitson published a bookAutism: How to Raise a Happy Autistic Child, to coincide with World Autism Awareness Week(March 26-April 2). It’s a practical guide for parents, including tips on how to make your home more autism-friendly and how to access the right support at school. “The way we view autism is changing,” she writes, “moving from the perception that it’s a terrible tragedy to happen to a child and a family, to the recognition that autism represents a different skill set in the brain function that is no better or worse than not being autistic.”

It takes on average up to three years to get a diagnosis in this country. Once achieved it is not only the key to unlocking funded support in nursery or school (what is known as an Education, Health and Care Plan), but also empowers parents to help and build their understanding.

“I didn’t know how to play with him or communicate – not realising he was autistic – and that created a barrier between us,” Hewitson says. “The diagnosis was a crucial step in helping me with these issues of isolation. Once I knew the words, I could talk about autism,” she adds.

Surely there is comfort in confiding in those who are going through the same thing? Not for everyone. Blogger and mother-of-one Lisa Savage went online to find a support network when her son Oscar was diagnosed. She joined a private Facebook group, Nedintheclouds. “But I wasn’t ready, and hearing other parents’ stories was too painful,” she says. “It made my own sadness even more real.”

Since then she’s followed from a distance, attended an Early Bird training course for parents and carers – run by the National Autistic Society – and made allies locally. She’s now a font of knowledge and ideas. One of her recent creations is a visual schedule board. This has images Velcro’d to it, showing Oscar what they are doing at the weekend. He will take the chart, move the images around himself and is then fully on board with their break from routine.

Savage, who lives in the same part of Surrey as me, did not just want to surround herself with other autistic parents and found her own space when Oscar was at nursery (and now at school). “I go to a coffee shop where I can escape ASD and be myself for a few hours. That’s where I started writing my blog, MrsSavageAngel.com.”

Benny with Anna and Alex CREDIT: HEATHCLIFF O’MALLEY

Via official channels I have found local socialising groups, where Benny can practice interaction in a safe environment. We’re also in the process of applying to attend a Barnardo’s-run Cygnet course which we will qualify for when Benny is seven.

For me, practical advice mostly came from other mums. I was floundering on Google trying to find appropriate activities and holiday camps. One mum who responded to my Facebook post pointed me in the right direction: for example, Challengers in Guildford – a centre for all disabled kids that provides courses and camps – and a special needs trampolining class at the local sports centre, the Edge. Another useful tip was to register Benny as disabled. He’ll get concessions and added to a mailing list of relevant services.

Finding the right school for us was paramount – and fortuitous. Benny and I have both found solace and friendship in his teachers at St Bartholomew’s Church of England (aided) Primary School in Haslemere. It’s a warm school that has welcomed Benny with open arms for who he is. Rather than shoehorning him into the school system, they cater to his needs and as a result he is progressing and increasingly participating. And he’s happy.

They have rearranged the classroom to create a more secluded book corner where he feels safe, worked occupational therapy routines into the day and they celebrate his skills such as very advanced reading and IT. With advice from the school’s head of inclusion, his teachers try different learning techniques, we catch up most days and he has a diary so we can monitor progress.We’re in it together and Benny has a burgeoning team of people who care, including our amazing part-time nanny and supportive grandparents – how lucky we are. We have a collaborative approach and an aim: to make autism a seamless and accepted part of family life but not let it rule us forever. I’m learning to listen to Benny. At five he now tells me when he’s feeling lonely, needs company and when he wants to play on his own. We have a train set in the attic and downstairs so he can play in our midst or escape the busy family scene – although he’s doing that less.

Slowly but surely, through short play dates and adult-led play at school, I’m hopeful he can, in part, replicate his relationship with his sister with some of the other children. Today he is off to his first birthday party since he started reception. He’s very excited, and so am I.

 

 

Thank you so much to Anna for letting me repost this.

Anna can be found on Twitter @twinwag