Leading up to Hallowe'en I'm seeing a proliferation this year of the Blue Pumpkin for Autism meme. Autistic on Wheels has a brilliant rebuttal of it here, including asking readers to check Snopes as it's Simply Not a Thing . No one does it, NO ONE and if they did do it (which they don't) is it really such a fantastic idea to anounce your child's vulnerability to their local neighbourhood? It's not like using a sunflower lanyard where you will be supported by DBS checked staff, it's announcing a vulnerability out in the dark, at night, to strangers. Very different.
Looking deeper I can see two issues - 1. Parents naturally wanting to protect their child against the stares of onlookers and 2. Parents wanting their child to be accepted by the wider community. We are often encouraged by the main stream media to explain our child's difficulties (or our own) in the hope that by doing so people will be more accepting. There is the trope that awareness leads to acceptance. However we do need to ask ourselves how feasible this is when hate crimes against the disabled are rising rapidly as reported here?
So what ARE we supposed to do? Lets have a think first about the issues I outlined above.
1. Parents wanting to protect their children against the stares of onlookers.
Oh I get you on this one - I so, so do. So many times I've not made transitions easy for my kids, not anticipated sensory issues, and a million and one other things resulting in at least one of us having a public, noisy meltdown. It is so HARD. All eyes are on us, my heart rate is up, I'm sweating and someone, somewhere will be looking and sounded disgusted. The hope here is that by wearing a t-shirt that says "Autie not naughty" or handing out cards/leaflets is that people will stop looking, understand and go away. Whilst I totally understand it's HORRIBLE to be the focus of unwanted social attention, let me ask you WHO is more important in that moment your child is having a meltdown? A stranger on the street who MAY listen if they a) know what autism is, b) understand the impact of sensory hell and c) understand that that reaction is not misbehaviour OR is it your child who is so totally overwhelmed that their brain has literally shut down to the point of being unable to do anything else in that moment? Stranger or the tiny being that you created and that is right now totally dependent on you?
Totally your call, but here is Agony Autie describing what a meltdown is and how it feels. Honestly in the two minutes is takes for the onlookers to stride down the street away from you, your child becomes yesterday news, whereas YOU as the centre of your child's world can be doing amazing things to support your child and their unique neurobiology. Useful things include taking deep breaths to steady yourself and them , using any pre-agreed plans such as hugging or stroking , or simply just holding space whilst the pent up adrenalin courses through their veins. By not shaming your child at this critical junction and by teaching them that they are ok, and that they matter - YOU are a PARENT SUPERHERO!!! why trade that for the bored onlookers?
Point number 2.
2. Parents wanting their child to be accepted by the wider community.
Again - totally with you on this one. All we want is to be loved and cherished through out our life. However there is good research that autistic and non-autistic communication is equal but different. There is no one right way to be - read more about it here. If we insist on using only non-autistic social skills then we run the risk of alienating the child not only from themselves but their community. Figures in the US currently state that Autism is diagnosed at 1:59 for boys, whilst girls are still under diagnosed. Rounded up to include girls that would be about 1:30 or even higher - so is being autistic and communicating in an autistic way really such a minority thing that we need to stamp out? Or course, this is very different to having a 5 year old flapping enthusiastically at a neighbour or having a meltdown in the street etc. Does that moment HAVE to be a teachable moment for the whole community though? Or can it be something that's just part of life, part of your life and part of your child's life. Disabled people are expected to live in a goldfish tank experience, people's awkwardness around disability led to Bronwyn Berg spiking her wheelchair handles. If you think that sounds extreme have a read of this and then ask yourself, why does disability have to be so performative? Can't we just get on with it? How would it feel to us to have someone narrating - "Oh she wears that jacket because she only wears brown at this time of year" or other such things as soon as we stepped out the front door? In terms of moderating the surrounding sensory environment so that our child can cope, such a monologue might well be distracting. Does every moment of our life have to be a teachable moment for someone else?
To conclude - go out there, enjoy Halloween (or not, the choice is yours). It's ok for you as a parent to have autonomy form the rest of the world - it does not need to know the exact details of your life, or your child's diagnosis or anything else. It will cope, I promise. And so will you.
We’ve had a really busy lead-up to becoming a charity on 22nd November 2018, and by the way, we are thrilled to announce that we are the FIRST Autistic Pride Charity in the UK! Check out this link to see who are our trustee’s. This is us on facebook and twitter
We’ve run the Autistic Pride Reading event in Prospect Park for 4 years now - and sold 700 tickets this year! As always we had our mix of arts, crafts, sensory play and talks including Ruth Moyse and Carly Jones MBE. Ann Memmott and Florence Dolle got stuck in making lots and lots of slime and were fairly covered themselves by the end of the day. As usual, the fabulous folks of Reading Society of Model Engineers let us hold the event at the Prospect Park model railway, and Reading Council let us spread out into Prospect Park itself. We also ran our first poetry competition, sponsored by The Literary Gift Company and judged by fabulous autistic poet Joanne Limburg. For the results of the competition, please click here
We have got a FABULOUS new logo! This has been designed by Simon the graphic designer from Crumbs the Word Bakery who are the wonderful people who annually donate a cake to be raffled at Autistic Pride Reading (this year it was this AMAZING Chocolate Overload Cake). They are also donating a profit of their sales to us and we think they’re rather fabulous for doing so! Please do check out their web-page.
We have been running our monthly families session at Burghfield St Mary’s and are moving to Burghfield Common Scouts Hut. We have a core of about 5 families that visit regularly. We offer sensory play and toys, crafts, books, lego, pokemon cards and Xboxes, plus hot and cold drinks plus biscuits - all for free. Do check our website http://www.autisticpridereading.co.uk/ for more details and times.
We have received a cheque for £500 from Burghfield Residents Association. This is to continue providing Burghfield Autistic Group for free and will pay for the rent, refreshments and PAT testing.
We were lucky enough to be offered a spot at Burghfield’s Annual May Fayre. We had a quiet space and sensory activities on offer. The slime proved incredibly popular! It was good to be able to meet and share stories with other local autistic residents.
Autistic Pride Reading was also at the Waterfront Festival. This was a great opportunity to be out and about making useful connections with autistic people, getting our profile out there, and making more slime! We love these sorts of events as we get to meet lots more autistic people and sometimes be the first openly diagnosed adult that many have met. We feel this is a really positive step forward.
We ran an adults discussion group in Earley looking at work by Luke Beardon on what it actually means to be autistic. It was useful to challenge internalised ableism and to spend time with other autistics. We are looking at holding a “Bring-your-own-interest” group sometime in the New Year so please keep your eyes out for that.
You might have heard Rachel Cotton on Radio BBC Berkshire, talk about Autistic Pride Reading to Bill Buckley and competing in the Andrew Peach show.
Autistic Pride Reading had it’s first Big Day Out - to Buckingham Palace. All thanks to the fabulous Amy Stoker and her team. We had our own private autistic families tour which was amazing! 20 of us were able to dance, draw, take part in a pretend knighting in the actual room where honours are given - it was an amazing trip. The most daunting bit was coming out behind the famous gates and have all the tourists looked confused as they tried to work out if we were celebrities.
Looking forward to seeing lots of you at our next event, Burghfield Autistic Group Christmas Special featuring magician Jay Rawlings. Tickets available from this link: Burghfield Autistic Group Christmas Special
Autistic Pride Reading is extremely saddened to read of the rise of measles in Europe following reduced uptake of the MMR vaccine. The BBC says of the European outbreak that : “Last year there were 23,927 cases and the year before 5,273. …. More than 41,000 people have been infected in the first six months of 2018, leading to 37 deaths.”
As autistic people this is terrifying - just over halfway through the year and already nearly twice the number of cases of measles as in 2017 and 37 totally preventable deaths. Purely because someone, somewhere decided that preventable disease and death were preferable to autism - despite there being many studies proving no link between autism and vaccines.
Looking online we can find a mass of confusion and fear on both sides of this issue. From some anti-vaxxers deliberately taking out their children whilst sick to infect others, to a barrage of ridicule aimed at these parents. Neither is a useful way forward, especially when there is simply no link between autism and vaccines. Lower vaccine uptake means no herd immunity which is why we there is a rise in measles and people are dying. Meanwhile the apparent rise in autism is simply caused by better diagnosis, and there is good evidence to suggest that the incidence of autism has remained the same over the millennia of human existence.
Let’s break this down a bit - are we personally, upset about being autistic and feel that our lives are worth less? Well no. Studies have shown that autistic children are kinder and more likely to share with their peers than non-autistic children. They have also shown that we are less influenced by advertising and flowery language, more accurate, less likely to be violent (but more likely to be the victims of violence) and of course always at the leading edge of technology.
Research have also shown other things such as that the communication difficulties associated with autism are actually a two-way issue caused by differences between the way the autistic community and the non autistic community express themselves. We are also examining the role of autism in human evolution through the creation of some of the world’s first art, and looking at the differences in expressions of empathy. We think autistic people have deeper feelings of empathy to non-autistic people and express it in different ways as opposed to simply not having it. All the known genes connected with autism are found in the entire population, it’s the combination of them that produces an autistic child. A recent study spoke about how the most common cause of autistic children was autistic mothers and ever since autism was first discovered, those studying it have noted how the parents display autistic traits and are employed in engineering,maths etc.
Autistic Pride Reading is not saying that autistic people are better or worse than people of any neurotype. We would like to say that autistic people can and do contribute an enormous amount to any society which we are part of and would like you to consider what those societies would look like without deep empathy, technology, art, compassion, kindness and honesty. We want to share with you and we urge you not to risk your child’s death because they might be like us.
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.