Happy international Women's Day to all of us, especially the autistic women. Lets try and encourage ourselves, our clinicians, our educators, anyone to be aware of the huge amount of unconscious bias that is affecting and preventing the diagnose of autistic women and girls. So many times as a parent have I noticed the exact same behaviour between my children and marvelled how differently it's labelled and how much that could affect obtaining a diagnosis.
"She's shy, that's ok for a girl because of course she lacks confidence"
"Of course he doesn't talk much, he's a boy, not emotional like a girl"
"When she fights it's just a cat fight, all girls do that!"
"So he hit someone in the playground, all boys do that!"
etc, etc. Of course none of these described behaviours by themselves would be worthy of diagnosis. As a sideline to notice that your child get's frustrated and anxious about social contact and doesn't know how to react "appropriately" then they are worth bearing in mind.
In honour to some fabulous autistic women I have the pleasure of knowing in my life, some of their blogs are here. Please note that woman is not necessarily the right term to describe someone born biologically female, and that you don't have to be born female to be a woman. Especially for autistic people who rarely fit into traditional gender roles.
As a parent it's always struck me how a child's autism diagnosis is often received with grief. That seems in great contrast with Tony Attwood's advice about congratulating the child on their diagnosis. As an adult I met my own diagnosis with an amount of surprise that was quickly quashed when I realised I was arguing about the correct diagnostic label with the person attempting to diagnose me.
As an adult it's made only a positive impact to me, to understand my structured way of thinking, my social abilities, and my very real and sometimes constant sensory overwhelm. It's made me able to pick up any good book on autism and experience profound recognition, even more so than looking in a mirror. It's given me a community of fellow's, of people who get it and many, many people who are happy to be like it.
Given that a diagnosis is generally (based on many other's accounts) so positive as an adult, why is there so much despair when children are diagnosed? Why did I cry when both of my children were diagnosed even? Especially when one of them was after I had been diagnosed myself.
The second is easy to understand - I knew what was coming, I knew about the difficulties we might face getting them suitable education, the potential social hardships, etc. These may be classified as social model worries. Regardless of how fabulous I might personally think #actuallyautistic people are, I'd be missing a lot to ignore the social model disability that is pressed upon us.
Why did I cry about the first diagnosis? Simply because my child became an other. In that split second my child became a complete unknown, someone who I no longer knew their new label was "autism" and not the name I'd given them. I got given a leaflet for the National Autistic Society; for the local autism society and details of the local offer. That was it. In 6 little words "in my opinion X is autistic" my world was destroyed.
It was hugely difficult at the time as simply everything had to be re-thought. The pre-school was already on the way out as they had failed my child several times, and the diagnosis strengthened my resolve to removed my child from what I could see was a harmful environment. It certainly wasn't for all the children, but for mine, the different one it was. Communication became visual, the spoken word ditched in favour of pointing and small pictures. The need for actions to be repeated became supported and embraced and the entire timing of our life changed. Sensory needs were read up on and understood to be the hugely important things they were. I finally understood that the similarities to myself, that I had always used to dismiss the thought that anything was "wrong" with my child, well I understood that they qualified me for diagnosis too and that there really was nothing "wrong" at all.
Family life is not as easy as I've just painted, and the learning was a steep uphill curve. It still is, as the kids are the best teachers I've ever had. I was incredibly lucky though as I was aware of the social model of disability, thanks to a friend of mine who had lived and died muscular dystrophy. She continually held society to account for disabling her - she knew she was impaired, but the actual lack of ability as implied by DIS-ability was from society itself. So many simple things made her life impossibly hard - a lack of ramps, a lack of properly accessibly toilets, a lack of decent physical support to help her cook, clean and care for herself. She lived the social model and challenged what we tihnk of the medical model of disability every day of her life. For her, and many others, accepting the medical model meant accepting it was her own fault she couldn't do the things she needed to do to look after herself, she couldn't contribute meaningfully to society as she couldn't get to work and many other examples.
This is where it's vital for us a parents to receive an autism diagnosis for our children in the spirit of the social model of disability as opposed to the medical model. Medical model means looking at our child as an other, accepting they will never play with others and not asking schools/play and care setting to help develop social skills; accepting they will always be lost in their own world as opposed to entering it with them, joining their interests and encouraging them in shared joy; accepting that they will always be an other.
Diagnosis is necessary in order to get the right support in place for our children. But not because we feel sorry for them as disabled others but because we loves them as autistic individuals with a lot to give.
Pride movements started in 1950's America with the civil rights demands for Black Americans. Hugely necessary at the time, they wrought and continue to inspire huge social change. The Gay Pride movements followed hot on their heels and have since been followed by various movements fighting for the civil rights of those involved. Thus we see Deaf Pride, Disabled Pride, Mexican Pride etc. The list is vast.
Autistic Pride was started in 1996 by "Aspies for Freedom" . The celebration of autistic pride takes many forms - it can be celebrated on the nominated day (June 168h) with festivals and other gatherings, there are conferences such as autscape that discuss various aspects of autistic life etc., or in many online groups.
There is a current feeling amongst the autistic community of a wish for self determination in services, lifestyle etc. In the Uk we have the Autism Act which alludes to this although many think more action needs to be done and bemoan the fact that cash strapped local councils are not always able to implement it.
So where does this leave us? We have a hugely diverse community demanding rights for autistic women, research and many other local and national charities. Autistic people themselves are just as diverse, some wishing to disclose their status as soon as they meet someone, some not too bothered, some ashamed. Intellectually we are all different too, 20% of us have learning difficulties, the rest tend to be in the higher IQ bracket. We have many conditions that can come alongside - these will be discussed in future articles such as sensory processing differences, executive function etc.
There are some core features though - our increased rates of depression, suicide and anxiety. This is why I personally feel it is useful to develop a strong sense of autistic pride. Not perhaps in the sense that one is autistic - we have no control over our genetics, but to enthuse and inform us living an authentic autistic life which includes a positive sense of self.
Thank you for inviting me today and your warm welcome.
I’m setting up this group to help prevent other families in the area going through what we went through when our eldest daughter was diagnosed autistic. Until that day we had had a fair few local friends that we went on play dates with, met over coffee and at the local play groups. After my daughter’s diagnosis we were completely abandoned by most local friends. One friend stayed in touch and one of her children was later diagnosed as autistic. She maybe had an insight into what we were going through as a family. Seen then we have been lucky enough to make more local friends, of children with similar levels of disability or from families who can accept our daughter for who she is. Despite her difficulties, my daughter is a wonderful, loving little girl who take full care of her pet cockatiel – which is pretty good for a nine year old!
I believe all of our autistic children have amazing potential – the thing is that as parents we have to be ready to drop our preconceptions of what we wish for them and fully embrace and support them in what they want to do. This isn’t always easy however – especially if one is feeling isolated from the rest of your local community. This is why I want to set up the Burghfield Autistic Group – so that local families can meet, share stories and let off steam in the same way that ALL parents do about their children. Autistic children are more often found in main stream schools than SEN schools as only about 27% of the autistic community has learning disability as a co-morbid. Most of us fulfil the stereotype of the Great English Eccentric, and can be found propping up the walls of universities, computer labs etc. I think without us, you’d be hard pressed to find genius and progression in engineering, the arts, the sciences etc. Our problems lie in the area’s of social communications – which can affect all area’s of life – from school work, to sorting out what some consider the basics of life such as paying utility bills or going to the doctor. In fact autistic people have 14% less life expectancy due to the issues we have communicating our needs to our doctors. I have had recent experience of being called a drama queen by an A and E nurse in the middle of a life threatening asthma attack. Just after this she said my observations were fine, so I tried to go home as I felt I’d been told I was making a fuss. As it was I was too ill to move and eventually got treated appropriately. But as you can see, because of our communication difficulties, most autistic people will run into situations like this.
This is another reason for this group – it will give our children the chance to practice appropriate communication with their rightful peer group. Most (75%) will be experiencing bullying at school, 85% will be experiencing sensory difficulties which will be affecting their ability to learn. Sensory difficulties arise from our over sensitive senses which mean we take in much more light, much more noise, much more taste etc than non autistic folks. This is why I’m hoping to hire the Village Hall – lots of windows mean I can avoid turning on the fluorescent lights (most autistic people are bothered by the flickering and/or buzzing from them, that non autistic people are oblivious too). My son attends a wonderful main stream school but often comes home with a headache which means he can do very little for the rest of the evening. Then of course he is not fully rested for the next day at school and the onslaught of noise. He has also had to drop out of local clubs for the same reason. Trying to make friends whilst being bullied by peers and being physically in pain from the environment around is hard work! Hence it would be my hope that this group would support local families and children to make friends with each other.
Another quirk of autism is that we really don’t do small talk. As you may have noticed I have very little interest or skill in it – what little there is has been built over many years of painful practice. It’s much easier for us to come together over something we’re interested in. Computers, pokemon, trains etc – after all most of these were invented by autistic people, so it makes sense? If we’re so capable why do we need the support I can feel you asking? That’s a good question – although autistic people are excellent at many things, communicating is not one them. Finding friends is hard, especially in school when we spend most of our time trying to learn though being in pain and being bullied. I don’t know the exact figures but because of our social difficulties, autistic people not only die earlier we also have much greater incidence of drink and drug abuse. This is to cover up the intense loneliness many of us feel – and again a social groups gives our children the opportunity to practice their skills in a non-judgemental, supportive environment. They can take these skills forward as well as having their self esteem improved too. Because I am “out” to my son in terms of talking about my own autism, he only has to ask me about x, y or z odd experience and I can instantly reassure him that that is normal for us. For example, he really suffers if children in his class misbehave and I was able to explain that as autistic people we are rule followers, and that rules help us feel safe. But what I’m hoping is that in the long term although he may still feel different, he will know that is ok and that he is ok and worthwhile. Most of us autistic parents have NEVER knowingly met an autistic person until the day our child is diagnosed. Imagine how terrifying it is to be told your child won’t develop empathy (untrue!) or have relationships or a job (all untrue by the way) – how does that make you feel? With this group I hope to support the parents too by letting them talk to an actual autistic person and seeing that we are happy and fulfilled in our way. That we can have relationships and good lives and be content – all the things any parent wants for their child. As a quick aside the quickest growing population of individuals going for diagnosis is autistic mum’s and this group can support those too.
Finally, back to my daughter. The range of options for children with her range of needs is so limited. In this group I hope to support all sectors of the community be providing activities for all – so games and lego for the more accomplished, sensory activities for all, soft play and a bouncy castle (perfect for those with adhd added in), train and other toys for all regardless of age appropriateness, and a bit of support and love for all. Please help me make this come true!
When the wind is calm
And the trees unbowed,
We find leaves scattered on the floor
And a million hopes for summer gone
The tree's weep, and so do we.
Hides all with a thick blanket of snow.
We freeze, the comfort paralyses.
The tree's start to bud
And our heart's lift.
Where the world ends and we begin is a curious thing,
We feel the world through our bones , drape ourselves in it's beauty, clothe ourselves in its majesty.
Sometimes we sense the misery of our friends seeping into feet and chilling our heart
We find ourselves too frozen to answer, powerless to act and cry teas of ice
Sometimes the heat of their happiness burns our skin, charring our embrace, searing our lips just as we want to reach out and congratulate them.
How much more soothing is a woodland walk, tree's lit by dappled sunlight and the dancing of birdsong in our ear drums. How much safer to feel the drumming of our feet on tarmac in the deepest part of our belly, how much wider is the world when we encompass it.
The white branches in our foreheads grow tall and strong, they cover our gaze and we peak out through them.We curl up in their embrace, the twisting of the limbs as they reach out through our senses gives us incredible beauty, incredible sadness, incredible joy.
Joy in small things
Minute, tiny, twinkles of thought.
In structure and lines
In conversations bigger than the world
In too many things to think at once
In beauty that strikes me to the core
Rendering me breathless with bliss
In shapes and stars and dates
In watching the breath and calming the mind
In watching the mind dance on the beauty of thought
In textures soft and smooth and fur
In music, expressing love