Tomorrow my daughter, Aspie D, will celebrate her 22nd birthday and I will have all my chicks back home in the nest together again for the first time since Christmas. Hip hip hooray!
The plan is to go out to lunch then return home to open presents, eat cake and play board games. No doubt there will be plenty of silliness and laughter too.
Last year we went to Thorpe Park for her 21st and although she had a great time, the stress from being around so many people exhausted her both mentally and physically, to the point of needing to spend several days afterwards hibernating and recuperating in her room.
This is called a ‘shutdown’ and this is just part of the reality for someone suffering with an Autistic Spectrum Disorder (ASD).
A shutdown is in direct response to sensory overload caused by too much external stimuli. My daughter’s sensory awareness of her surroundings through noise, lighting, even colours and taste, are already on high alert even under the calmest of circumstances, so if anything else is added to the mix, her internal responses explode into orbit.
The need to seek refuge and block everything out are reactions beyond her control and are not designed to seek attention or sympathy. She has no choice.
My daughter can’t go to parties, clubs or pubs. She doesn’t have a social life outside her home and online community because the price she has to pay both emotionally and physically cased by the stress of doing so is just too high.
She desperately wants to go out like her friends but she is trapped by her own limitations. She tells me of times when has spent hours crying into the night while I sleep, in utter rage and frustration at the unfairness of it all. She would give anything to change her life but at the moment, she simply can’t.
Aspie D attended childhood parties like any kid but I often sensed that something seemed slightly off kilter with her. I couldn’t put my finger on it, she seemed happy enough yet when I look back at photos of her with other smiling kids she looks strained, her eyes hollow. I now know that she was silently pleading with me to get her out of there because she couldn’t stand another moment in that room.
She copied her social cues from the other kids and did her best to join in but she just wanted to be left alone. I used to watch as other girls would try to grab her hand so that they could skip down the street together but it was plain to me that she hated doing it.
She much preferred her brother’s friends, feeling much more at ease with them (but usually to the great annoyance of her brother).
Middle son Nicky often had friends over for sleepovers. I had to smile one Saturday morning: I came downstairs to make a cup of tea only to catch sight of one such friend (but not Nicky who was still in bed asleep) and Aspie D sitting on the sofa together in their PJ’s eating out of bowls of cereal laughing their heads off at ‘Sponge Bob Square Pants’ on the television. I grabbed my own bowl of cereal and joined them.
Aspie D makes her choices socially because it is impossible for her to maintain composure and false social graces (she doesn’t do small talk) for long. It drains her and of course she is mindful that she doesn’t want to come across as rude. She will hold a conversation of course, she is articulate and smart but communicating her feelings, explaining what she means gets her in tangles.
This is part of the classic ‘social communication’ disorder that defines ASD and has other repercussions: for instance, she could never tell anyone outside the home that she is ill or had some kind of problem or ask a stranger for help if she was out alone, got lost and needed directions. This, of course, makes her vulnerable.
She so often feels like a stranger residing in an unfriendly world where everyone speaks in a foreign language that she can’t understand. It is a sad, lonely place for her and therefore one that she avoids travelling to as much as possible.
So often she felt invisible and disregarded within her peer group when she was at school and college because misunderstood efforts to communicate on both sides often caused problems. This is where those with ASD can struggle so badly. While today my daughter has a wonderful support network of online friends (and blogging taught me the value of online friendship, helping me understand her community so much better), anything more than that right now isn’t going to happen.
My daughter slipped through the cracks and wasn’t diagnosed until she had already left sixth form college when she was eighteen. As the years went on and Aspie D’s anxiety increased, she became more socially avoidant but nobody would help us despite repeated visits to the doctor. Diagnosis for females with Asperger’s is notoriously overlooked, so often misunderstood.
According to the National Autistic Society, the three main areas under which Asperger’s Syndrome diagnosis is made are:
- Social understanding
- Social communication
- Social imagination.
Yet girls and women on the spectrum are more often missed, because they learn to mask their social difficulties by observing and copying what to do rather than acting instinctively. This is why they are so often overlooked when it comes to diagnosis. They can be astute, sociable and say and do the right things, but the effort this takes throughout life is exhausting and often leads to mental health problems such as severe anxiety and depression later on. (Tony Attwood, 2007.)
“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.”
(Dale Yaull-Smith, 2008).
This isn’t meant to be a dark post as its title suggests. I merely hope to highlight some of the struggles that those with ASD live with every day through writing about my daughter’s and my experiences and some of them aren’t pretty.
Yes, it’s true, some days my heart grows heavy in my personal struggle as naturally I worry a lot about Aspie D.
Sometimes, retreating from the world and doing nothing but curling up on the sofa watching back-to-back episodes of ‘Sponge Bob’ sounds pretty good. Or ‘Breaking Bad’ for something slightly more gritty.
With Aspie D of course.
But (and it’s a big one) dear friends, you know how it is and I know I can park it here. No sympathy, just telling how it is because that’s life isn’t it? Life’s rich pattern, onward and upward and all that.
Ultimately, I believe that life is good and each day is to be savoured, given to us as a gift, enjoyed to the full. We are greatly blessed and I am eternally grateful for all we have. Love, Life, Laughter. Tomorrow Aspie D will have a great birthday celebration I’m sure and I am confident that she will find her own, unique way in life one day at a time.
But first, let’s get this party started! It really is ‘Alright Now’.
Happy Birthday Darling Daughter!! Love Mum :-) xxx