To The Unrecognised . . . We Are One

To The Unrecognised…We Are One.

Posted by: Emma Dalmayne

To The Unrecognised…We Are One.

 

As an Autistic diagnosed with Aspergers a year and a half ago I remember how it felt to not have a diagnosis.

I seemed to need that written affirmation as to who I was, and while I’m happy I have my diagnosis I often wonder if it would have made such a difference to me if the neurotypical psych in the office had have not recognised me as an Autistic.

If I had answered the tick list differently and given my history in a way not satisfactory to their requirements I would have ‘failed’ and been misdiagnosed.

The worry I have is how people in adulthood are diagnosed, you are required to give a childhood history and many rely on their parents to help them with this.

I had no parental help at that time so could not ask them for feedback, I did the best I could describing the alienation, the way I lived in an alternative reality dictated by special interests that I depended on to check in with after a hard day at school.

I had to recall and describe how objects have always been there dependable in their consistency unlike people

That after a day of feeling ostracised and misunderstood by peers in secondary school I could come home and open my cupboard doors to my Marilyn Monroe collection, everything arranged perfectly my videos in order of appearance and date.

My 1950’s movie magazines set out on the shelves so the covers showed lined up in a glorious technicolor riot of comfort.

My prize Marilyn statue in pride of place.

This was a collection yes but it was visual tactile auditory reassurance that I mattered.

If I had not been given a diagnosis would I still be autistic?

There are some that would say no, I had failed the test therefore I could not be.

I believe this to be wrong.

I’m not saying everyone who has been told they are not Autistic is, I’m saying that if you have been tested and are not happy with the result but have no means of being re tested yet feel like your are indeed a spectrumite you may have to look to online testing for your own personal affirmation.

The visual tick lists in place are often male dominated, females have masked and learnt to ‘fit in’ so lack of eye contact and using expressive hand gestures may have been learnt, reacting to and reeling off sarcasm may be done with ease.

Meltdowns for females are often implosive and tearful so you are liable to be labeled a drama queen, explosive?

You’re then a diva.

Males may have learnt to banter, make eye contact and explosive meltdowns can be just passed off as bad temper, not recognised as frustration and anxiety or attributed to sensory overload.

We are judged on body language or lack of it, we are judged on empathy or lack of it!

There are many of us undiagnosed as Autism was not recognised as easily years ago.

Parents are joining online forums and groups on Face book for seeking support for their children yet recognising themselves in the adult autistic postings.

Migraines are then recognised as sensory overloads, temper accepted as meltdowns and the feeling of being on the outside never really fitting in is lost as they find a community of acceptance.

Many will feel anger at years lost with no help or support, they will feel frustration at the misunderstandings socially they and people close to them will have suffered.

If only they had known sooner!

The relief is incredible to finally find a tribe of kin whom they feel they have known forever.

Some will not seek a diagnosis, they feel they do not need a ‘label’, and they are right.

I personally look on diagnosis as a recognition of being neurodiverse, but by no means  does my diagnosis invalidate someone who is not diagnosed.

There is a misguided hierarchy in the autism community, debates often seem to be ‘won’ with the question of “ Are you diagnosed?”.

This is wrong, so wrong as at one point even if it was when we were children we were undiagnosed to.

To the Unrecognised I say welcome, with me personally there will be only acceptance and a need to help and educate you and on behalf of you.

We Are One.

A New Piece by Autistic Artist David Slater

A New piece by Autistic Artist David Slater

Posted by: Emma Dalmayne

Aspierations Party in the news!!

Aspierations Party in the news!!

Posted by: Emma Dalmayne

 

http://www.mercury-today.co.uk/article.cfm?id=115147&headline=Party+for+families+touched+by+autism&sectionIs=news&searchyear=2015

Bleacher Raided!!!!

Bleacher Raided!!!!

Posted by: Emma Dalmayne

It is with great pleasure that I have seen a bleacher raided in the last few days. Their supply of MMS has been confiscated and hopefully this will keep her poor child safe, at least over the Christmans period.

This has made The Times. Unfortunately I can only share a screenshot to the story as you need to subscrive to access it on the site.

We continue to campaign against these horrible treatments. Little by little we make the difference. Keep walking with us against this horror.

A Shutdown In Motion

A shutdown in motion

Posted by: Emma Dalmayne

A shutdown in motion

We often read of the classic autistic shutdown, the feeling of moving through space with no gravity weightless and ungrounded.

The need to sleep and not feel, not be connected to anything is a self defence mechanism that is employed unwillingly by us when there’s to much stimuli and upset around us.

But what does an autistic do when they cannot shutdown?

I often feel a shutdown approaching, a dreamlike state of detachment to my surroundings but if I am out with the children or alone with them I have learnt to get them home safely and breathe until we are in a safe environment to do so.

I will know one is coming when I begin to be unable to tolerate conversation, noise and become short tempered and feel a sudden extreme tiredness.

We will go to the bedroom, put a DVD on and a lamp for low lighting.

I get some toys out for them put on the safety gate while I slowly shut down in bed and if need be sleep.

A shut down is not an unpleasant feeling, it’s disorientating and feels a little like being tipsy after a glass of wine.

If you feel a shutdown coming on do not panic, breathe and head to somewhere safe quickly.

If you are shopping leave your trolley, jump in a cab.

If its your child shutting down try to get them home, if it’s to late allow them to sink to the floor and stay with them, do not force them to rise as they may very possibly meltdown.

Think of it as a break your brain needs, allow that time as pushing on through can cause meltdown or a painful sensory overload.

Aspierations Christmas Party 11/12/15

Aspierations Christmas Party 11/12/15

Posted by: Emma Dalmayne

Aspierations  Christmas Party 11/12/15

The day dawned wet and miserable but nothing could stop the indomitable Christmas spirit and good cheer of the Aspierations and Autieness Facebook group.

From far and wide they travelled to the Child Developmental Centre,  Wensley Close in SE London, who had kindly offered the use of their facilities for the gathering of autistic adults, parents and children.

At 1 o’clock the party started with plenty of food drink and Christmas songs intermittently interrupted with the excited squeals and laughter of the members children.

A ball pit room along with a beautifully equipped sensory room had the sensory
stimuli for the children and adults
perfectly catered for.

I’d like to thank the very kind businesses whose donations of doughnuts from Greggs Foundation, a gift card for food
 from Sainsbury’s, balloon animals and swords donated by Story Face, mascots and face painting donated by Bubbles and Bounce, fruit from the local greengrocers,  children’s bubble bath from Weston’s Pharmacy and paper plates from Avery Hill True Man  made the party a great success.

An array of food ranging from sandwiches to sausage rolls, chicken to marmite cheesecake and from pasties to roast parsnips made for a g
eat feast which was enjoyed by all.

The party was also attended by the local papers photographer who took some wonderful pictures of the children and a brilliant group picture.

Thank you to Cathy Withnell, Partner Shane and Heidi, Bill Appleton, Matthew
Poutney, Simon Barnes, Laura Cook, Lauren Gowers, Michelle Goody, Natalee Soraya-India Dawson, Therese Johnson and partner Mark, Paulina Majgier and partner, Alan Borgars and Hayley Porter  for attending to
day and to the parents thank you for bringing the children they were a delight.

 
With thanks to these two wonderful businesses for their support and assistance:

https://m.facebook.com/Bubbles-Balloons-and-Bounce-1676509049253168/

http://www.storyface.co.uk

 

Sex and Âûtism. A Reality Check.

Sex and Âûtism. A Reality Check.

Posted by: Richard Johnson

***content warning*** contains sexual references

Sex and Âûtism. A Reality Check. – By Elinor Broadbent

One of the most common questions I am asked when people find out I am autistic AND I have kids is “but how do you have sex if you don’t like touch?!” Followed closely by the statement “I thought you people didn’t like sex”.

Well dears just like everyone else, some people like sex, some love it and others have no need for it. Yep, we are just like your average Joe. We all have different sexual preferences, different likes and dislikes and some have pretty interesting fetishes too. I personally like sex. In fact I love it! I love the intimacy and the connection, the exhilaration that comes with it and the feeling of contentment afterwards.

So let me address some issues speaking from my own personal experiences of sex and the building up to intimacy with someone.

While it is true I do not like light touch because it causes sensory overload and feels like a thousand needles pricking at my skin or like that awful ache you get when you have the flu I actually love heavy touch. I find it quite soothing and can’t get enough of it. So when it comes to sexual encounters where intensity builds and you want to be with that person touch quickly becomes a stimulant not a deterrent.

If I know its coming, I can handle light touch as well up to a point. My children know not to touch my face because I react badly to it and they know to ask me first. They also know that as soon I say “that’s enough” that means to stop right away. I have trained them to be responsive to my physical reactions as well as to listen to what I am saying.

Sex is not that different really. Its about learning boundaries between both partners and listening. Good communication is key and we will address that a little later…

When it comes to sex I actually love light touch and in speaking to others I have discovered I am not alone. Strange isn’t it? In reflecting on this we come to the age old issue of attitudes towards Âûtism. How we experience the world is greatly influenced by how we perceive ourselves. If we think we are broken and deficient then the world becomes a dark place where everything is working against us. And if we see ourselves as unique and an asset to the world around us we search for opportunities to rise to and find the positive in the challenges that face us. That’s not to say we don’t struggle. Everyone does but perspective can make a big difference.

It may sound silly, but in the case of sex Âûtism and your sensory sensitivities can be your super power. It means that light touch can lead to quicker and more intense arousal as your partner caresses your face or any other part of your body which will equally excite your partner.

If you are sensitive to receiving light touch then it likely means that you are also sensitive to the touch you give. This is a brilliant asset when it comes to foreplay because you can feel your partners physical responses to you as you discover their various erogenous zones. The way they move when you brush your hand against their chest or stomach, a slight shudder of pleasure or even an increase in their heart rate. This is a great way to work out what arouses them and what calms them down depending on what you want to achieve.

All our senses can be used to heighten the experience, listening to the way their breathing changes, noticing the way their lips move or a slight arching of their neck and back…there is so much to discover about each other and the journey can be an exhilarating experience.

In any relationship communication is a big key. We often talk about the problems we face communicating with others and this is another frequent question people ask me. “How do you know what they like or they know what you like”?

It can be an awkward experience trying to be intimate and feeling like you are fumbling around in the dark with no clue that what you are doing is working or not. It is quite okay to talk during sex, actually I would go so far as to say it enhances the experience. Asking your partner if they like what you are doing and vice versa takes away the guess work and the anxiety you may feel, especially if this level of relationship is new and you are just learning about each other. And lets face it…âûtistics are notorious when it comes to second guessing and feeling anxious so communication is very important. Communication is not always verbal either. It can be something as simple as moving a hand away from or towards your body, a change in breathing, or as stated earlier a movement that indicates pleasure.

And finally stay safe! We all have limits and boundaries. Things we do not feel comfortable doing or we have simply had enough. For example, an orgasm is a very intense experience and for those who have sensory sensitivities there may be a need to stop once you have climaxed because it may become uncomfortable or unpleasurable. That does not mean that we should avoid sex for fear of reaching that point or doing something we don’t like but instead find a way to say that you have had enough. Use a safe word that your partner and you know means its time to slow down. It can be as simple as saying “enough” or “stop” or if you feel that is too blunt use a colour or object. Anything will work as long as you both know.

Respecting each other in this journey of discovery is key for a successful sexual relationship. It is quite okay to go slow if that suits you. It is also quite okay to say no if you don’t want to and to take things at your pace. Don’t give into the pressure to be just like everyone else but do what is right for you and your partner. After all, this is a personal journey and everyone is different.

I hope you find this helpful and encourage you to share any insights you may have that I have missed.

Shine Bright Everyone,

Elinor Broadbent.

For The Little Fairy In The Lilac Tutu

For The Little Fairy In The Lilac Tutu

Posted by: Emma Dalmayne

For The Little Fairy In The Lilac Tutu

As a woman who’s autistic I realised it has fallen to me to to write a letter to my little self.

I was only diagnosed with Aspergers last year and with that recognition has come so many realisations, happiness, relief and a whole lot of resentment.

Realisations that the way I have reacted to situations both happy and sad are for a reason, ie violence in relationships would bring internal meltdowns and shutdowns.

Happiness to finally embrace the woman I am, the woman who scripts out loud as she cooks, the person who dances as she gets dressed to music she can select and play in her head. The woman who since being diagnosed has lost “ friends” and gained allies.

Relief that I am not mad, that I am not an actor gliding through a life of unscripted film sets clueless as to what scene changes may transpire with seemingly rapid transition.

Resentment, oh so much anger.

The bullying as my voice would fluctuate into many different accents reacting to mood and circumstance.

The fact I’ve accepted much less then I deserve from people, as self esteem issues whispered lies into my gullible ears telling me I was worth less.

The ostracisation I’ve faced from people whom I had thought were friends….mothers with autistic children whom when it comes to the crunch would alter and cure their children without a thought, to make their own lives easier.

To these people I say acceptance is the key, change yes, but change your own outlook to acknowledge your child is autistic, stop looking for alteration embrace all you have.

Without further ado I write this letter to the little ballerina, twirling in a lilac tutu.

To my little sweetheart,

As you sit wondering why your mother treats you this way,

And you listen to the arguing that happens each day,

Realise it’s not you they argue about,

It’s not you that causes them to bellow and shout,

Two people that should never have been together,

But lucky they were dear,

As without,

You would never,

Exist and be you,

No you wouldn’t be here,

Watch as I weave all your dreams will appear.

Now daddy has left and your safety nets gone,

You struggle and befuddle,

To make your way on,

With a mother who doesn’t,

Know right from wrong,

Gets tearful and wails to a particular song,

On those nights you retreat,

Into a fairyland world,

Where you have friends,

You matter and you’re a popular girl,

Not knowing as you endeavour,

You stoop you claim,

You pick up a feather,

You touch and you stroke,

And along your lips swipe,

It’s sensory seeking as you try as you might,

To ground,

To regulate,

You brave little girl,

You see the whole world,

Dressed in diamonds and pearls,

If only it was and the abuse had not been,

Communication problems,

Secrets unseen.

Secondary now

Still not picked for games,

You stand out so fit in,

Latest fashions obtained,

Chart songs learnt,

Lingo practiced and said,

Still not working,

Bullies hurting,

You strive to be dead,

But I was there you see,

I made it not work,

As you had so much to live for,

So I waited and lurked,

Bad choices,

Strange voices as you struggled to see,

Who you would grown into,

You still hadn’t seen me.

Relationships next,

So many vultures,

And trash,

You struggle it’s muddled,

They feed as you thrash,

Yet you rise,

Undaunted,

One who waited to long,

A strong woman proud,

With the beat of a song,

With a need to do right and correct all that’s wrong,

Six soul mates you created,

Amazing they gleam,

Like six pearls they glide,

With the rhythms of dreams,

Recognition as autistic,

You’ve found where you belong,

Insecurities slain new beginnings begun,

You see little girl,

You weren’t strange odd or weird,

Not a freak,

Not a fool as so often sneered,

Too kind you were,

Too naïve to sweet,

Your allies you’ve met,

Smile as you greet.

Sleep little princess as you realise,

You see,

I remember the fairy in dreams,

It was me.

Sensory Breaks and An Inclusive Ethos.

Sensory Breaks and An Inclusive Ethos.

Posted by: Emma Dalmayne

Sensory Breaks and An Inclusive Ethos.

With children knowing school holidays are looming with class parties and the much encouraged by the schools stage performances you may find your little one starts to exhibit some anxiety.

As you may know I’m a home educator and I will tell you why.

In schools I have found that many of our children are not supported when they need it most, at lunch time and in the playground. Our children struggle socially and are often left out or bullied.

Add then the anxiety of having to perform on stage in front of a packed hall and be it Christmas cards or other types of parties, you then have veritable melting pot of worries. Will they receive as many cards as the most popular kid in the class? Will they make a mistake on stage?

These things panic and bother our children to the point of night terrors and diarrhoea attacks.

If your child does want to do the Christmas performance then all well and good but please if they do not do not feel under pressure to make them do it.

Some schools are great and if you have a school that is doing well for your child on ECHP/I.E.P and is following it more power to you.

At the least they should be offering sensory breaks and allowing your child to leave class and go to a designated quiet area if they become overwhelmed.

The best ECHP I have seen implemented sensory play and allowed time in a specially purchased by the school dark den complete with lights and stimm toys. Those schools are rare.

Your child may need support eating their lunch and prompting to use cutlery and not rush.

They may need support to join in a game and participate with help if they get frustrated by the rules.

But if your child seems anxiety ridden ask them what they are worried about, if they have trouble verbally telling you give them paper and pens/pencils and let them draw or write it.

Role play with them with dolls, a lot can come out in play.

Children with autism may not know to tell you that their teacher is unpleasant to them or a child has bullied them, they may just accept it and believe its how school is meant to be.

You have to ask specific questions and draw it out if its there or you may never know.

My son assumed I knew he was being bullied and melted down every morning and after school. I never knew why and when I found out I withdrew him.

Also I found that with schools the generalised education and academic gain is one size fits all. If your child is falling behind and having trouble understanding or keeping up they must provide extra help or they are not being inclusive.

You may find homework causes anxiety. Many spectrum kids have trouble transitioning what they primarily see as school work to home. You can ask that homework be stopped, its your right as a parent to do so.

You can also de register your child from the school and home educate them if need be.

Your child needs faith,love and encouragement.

If you see your child crumbling seriously consider an urgent team around the child meeting,  look for another school or remove them.