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 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 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.

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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.

http://annsautism.blogspot.co.uk/

http://britishautismadvocate.simpl.com/

http://ceibhfhion.blogspot.co.uk/2016/04/seven-things-i-would-like-to-tell-you.html

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.

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.

Winter comes,
Hides all with a thick blanket of snow.
We freeze, the comfort paralyses.

Spring
The tree's start to bud
And our heart's lift.
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