On the first day of Christmas Lyndsey will be sitting with Lucca in his bedroom whilst he has a meltdown – screaming and hiding in his room because he has become so overwhelmed with the noise from his twin brothers excitement when opening their presents.
Whats the message?
Christmas ruined. Families suffering. Autism invading the peaceful holiday season checking around its meltdowns and causing disruption.
It’s as difficult for the brothers as Christmas is tailored around Lucca to try to prevent a meltdown. The family will have no tree, decorations or lights because of Lucca’s sensory sensitivities. The smell of Christmas is overwhelming for him.
What’s the message?
Those poor siblings, that poor mother. A terrible upsetting Christmas.The anxiety of unknown presents. Inability to cope.
“My feelings go on the back burner until Christmas is over then I have a good cry.”
Whats the message?
The message I get from all this is that autism is feared. Autism is unpredictable. It is a disruptive and uncomfortable force. Autism makes Christmas hard, for those diagnosed and thus in turn for everyone else around them.
The quotes above come from the National Autistic Society (NAS). The NAS is the UKs leading recognised charity to support those with autism. This is the ‘go to’ charity for advice and support for parents and professionals and this is what we are fed. Utter crap.
Let me tell you about our Christmas. Our family Christmas where autism is understood and integrated instead of being squished into an uncomfortable set of formalities and rituals.
Despite it only just being November, Christmas has already started creeping into our house. Dylan loves the noisy singing Christmas decorations that flap and sing and repeat. You know the ones; really loud! He has already selected his favourite for this year and plays it throughout the day. He loves the endless food and the constant stream of tea biscuits whilst snuggling under blankets on the sofa watching Christmas movies.
No he’s not keen on visiting or having people over; so we don’t.
He doesn’t like the look of some decorations; so we don’t have them all out.
In fact we see Christmas as a time for us all to be together comfortably and Dylan really enjoys that.
‘The Twelve days of Autistic Christmas’ NAS campaign is a slur on the beauty of our Christmas.
This campaign takes advantage of Christmas being a time where we ALL get a bit tired of relatives, of too much food, the decorations and excitement- that feeling we all get but somehow tries to make it into an AUTISM problem.
Come on NAS! Okay, I get that this is your fund raising ploy for the festive time but are you really peddling the pity card for donations? Shame on you. Bearing in mind your website motto is;
“Until Everyone Understands” may I suggest you review your fundraising methods? The stance on an autistic christmas is gloomy, promotes negative judgement and is not offering any understanding to those with autism that find situations difficult around the Christmas festivities.
Christmas should be an opportunity for families to come together, to understand one another and as a leading charity you should be making efforts to facilitate this. It is not an opportunity make money from the fear so many have that we somehow can’t manage our children or relatives with autism and so we have to face the prospect of doing so with dread or despair.
I feel for Lyndsey. I’m sure she didn’t wish for her Christmas story to make her son sound like such a burden but unfortunately this is how it has been portrayed by an organisation which frankly should know better. I genuinely hope that Lyndseys Christmas is better this year both for her and the whole family; But most of all for Lucca who sounded like he was having a terrible time. If only there was a supportive understanding national charity who could advise the family and support him instead of promoting his story as a negative piece of press to generate funds.
Anyone know of one?