Autisticate Dalmayne: August 2015

31.8.15

Autistic Artist – Sanni Rosenburg

A wonderful video showcasing the talented Autistic artist, Sanni Rosenburg, who has kindly provided some of her wonderful art for viewing in the gallery.

30.8.15

The Good Girl

Posted by: Emma Dalmayne

It’s 2.18 in the morning and my little daughter is jumping on the bed wearing a Minnie Mouse dress and meowing, her little face lit up with happiness. We are watching a Barbie film and my son has just fallen to sleep.

My girl has just watched Frozen and is insisting on having a piece of tissue stuffed down the back of her neck as a cloak, even though I found some lovely soft fleecy material that could do the job and is the perfect size she screams “No!” so we stick with the tissue.

I say to her “ Will you be a good girl for mummy and sit down?’.

Then I stop, she has stopped and looked at me, she’s not smiling anymore.

I’ve just implied she’s not a good girl because she’s jumping.

I feel dreadful and smile tiredly telling her “ Or jump and be a good girl.”

You see she was doing no wrong, she was expressing happiness at 2 in the morning bouncing to balance her vestibular.

So often parents see the behaviours our children express and believe they are being naughty, the sensory seeking flooding of the bathroom and the pouring out of the shampoos and tipping of washing powder.

People look and see our children lying on the floor screaming and think ‘ Brat!’.

They look at us and wonder why we don’t take control, drag the child up and as I’ve been advised in the past “Give him a good slap!”.

That friendship ended that day.

I was accused today of not understanding other parents ‘ grieving process’ when their children are diagnosed autistic. I never experienced grief.

I experienced relief, anger that I wasn’t listened to sooner and was disbelieved.

I experienced sadness for the difficulties my son would face and panic of how my children would cope when I’m no longer here.

Lastly I felt intense resentment for anyone who asked the questions and made statements

born of sheer ignorance.

I’m sure you’ve heard a few of these?

So they can grow out of that right?

What’s his special talent? I heard ‘they’ all have one!

He’s fine they are over diagnosing these days!

Was it the vaccines? Many parents say it is you know? ( from a nurse who was about to vaccinate him with his pre school booster).

What’s wrong with his legs? ( out in his major buggy).

Don’t let him hit you! I wouldn’t have that shit.

Take his iPad away, he’ll learn.

Discipline! That’s all he needs.

A good slap would sort that out.

Diet, it’s all about Diet. The GF/CF diet worked on Jenny McCarthys son.

Camel milk!

Sip water from the empty shell of a giant African land snail.

He just needs to interact with other kids, he’ll learn.

Make him go to birthday parties! He HAS to.

He’ll eat it if he’s hungry.

Get his metals tested.

Leave him to cry he will fall asleep.

So, you won’t be having any more kids right? I don’t think you should……

You had a life, now look what you did….

It’s a sickness, illness, disease….

Your not brave enough to try and heal him he can be recovered!

That’s the ones I can remember. There’s more I’m sure, and all meant differently.

Some intentionally hurtful some well meaning, all raising a resentment in me that would make me want to smash someone’s face in.

You see we as parents put up with that,

We cope with seeing our child have meltdowns, we get hit and spat at.

Sometimes we cry, we run out of the room and cry through sheer frustration because we cannot work out what our baby wants.

But let’s look at that again.

Our child tries to cope with meltdowns so frustrated they hit out and spit at the one person they know will never leave them.

Sometimes our children cannot express what they need, they can’t make us see. They watch us run out with tears in our eyes, and they feel what we feel.

You see your in this together with your child.

No one knows better then your child what you are feeling, they know because they are feeling it ten fold.

I’ve learnt that signing is instant, if my child can’t express what they desperately

need to communicate we sign.

If they are melting down I stand back as I know that a touch can feel like an electric shock, unless they are self injurious or in danger of running into the road I do not touch them.

I’ve learnt to take a deep breath and count to ten, if I have to jam my fingers in my ears to do this then I do.

We all as parents know our children better then anyone.

We know them better then the paediatrician to whom we have just described our child’s newest behaviour, while they peer at our child sitting there quietly.

Legs swinging.

We know them better then the teachers who look at us patronisingly as we describe the meltdown our child had after school the previous day, we boil inside as they look at us and say “ Well their fine here. They don’t do that here. Is everything ok at home?”.

We know that that meltdown was due to one of three things, sensory overload, frustration, lack of communicational skills to be able to relay how they are feeling.

I hope I have shown that I do see where you are coming from as neurotypical parents.

I cannot say I know how you feel as I have a unique understanding of my children where as you may experience difficulties.

Please notice I said MAY.

That doesn’t mean that I don’t suffer frustration, try witnessing your child’s meltdown while feeling a meltdown yourself. Try coping with your child screaming in excitement when you have sensory overload.

I don’t pretend to know everything, but I do my best and so far I’ve done pretty well.

It’s now 3. 15 in the morning, little Minnie Mouse is having a feed and watching Balamory, she’s takes my hair and waves it back and forth in front of her face as a visual stimm.

She’s wide awake, and we will party on till the early hours.

She’s my good girl, and I bid you goodnight.

29.8.15

Saved By Mother Nature

Saved by Mother Nature

Posted by: Richard Johnson

Saved By Mother Nature by Jules Akers Curtis

Maybe I should have seen it coming. Yesterday was hard and exhausting and sleep was spare.

But I make lists. I need to know what I am doing on any given day. I have to see it through. Tick off the events and accomplishments as I go along.

But (that word again) I kept changing it, kept forgetting things, not on form not on top. I’m a man a father a boss a graduate a nurse I should be in charge. “Get a grip”.

Bus to town, step off, facing crowds normally that’s fine- I have a target I just make my way there, do what I need, smile, say thanks see you next time, and move on.

This time I just forgot. What the heck was I going to do? So many people and the oppressive humidity. Head and heart misbehaving.

“Go somewhere quiet and familiar, gather your thoughts”. Yes, that’s a good idea. Indoor Market café. Make your usual order according to the script “Hi”, smile, “coffee and a teacake please”. Hand over sum of money. Receive comestibles and smaller sum of money in return. Smile again, a little ad lib “cheaper than Starbucks”, she smiles then I’m back to script: “thanks very much”. Good, empty table.

One conversation on a table behind me. Babble. Another over my left shoulder. Babble babble. Another one I can’t place. Babble babble babble. A general drone under them of people exchanging money for goods or vice versa and making remarks accordingly. Baaaaaaaaaaaaaabble.

Conscious of starting to sweat with the humidity. Look ahead and there is a slowly flashing electronic sign of about ten letters (for a second) and maybe six letters in alternating seconds. No point looking away I know it’s there now. Can’t read it. I can see the letters but I can’t read it.

And my anxious thoughts about the impending show, the impending wedding, the impending new job, the impending this, the impending that, were melting into each other and blending with the layers of chatter and the lights and degrading like old butter pats in the sun turning into one wordless super-thought called “everythingisgoingtoshitandthereisnothingicando”. “EVERYTHINGISGOINGTOSHITANDTHEREISNOTHINGICANDO.”

My mobile was in my pocket, rescue was there, my headphones and songs, I could be listening to The Albatross or Summer Somewhere or The Awakening but I was paralysed knowing I would have to search my pockets, cram my hand, just couldn’t move it just seemed too…..much…effort. Head and heart still misbehaving now my stomach decided to join the mischief.

I know it is Stockport Market and no one has ever died there (I guess) but right then it was becoming the 9th Circle of Dante’s Inferno. If I did not act I would be stuck there, surrounded by oblivious traders and shoppers but lodged in Satan’s stinking mouth.

OK you can’t stuff your hands in your pockets but can you stand up? Can you walk? Can you get to the exit? Easier than clumsy pointless fiddling, does not involve fine motor skills. It’s just straightening your legs and putting one in front of the other. If you don’t “everythingwillgotoshitandtherewillbenothingyoucando”.

Past the blurry shapes of stalls and the humans into the outside and Mother Nature to the rescue. Rain. A cold compress for the brain. Not just a drop or a drizzle, one of those cold monsoons we seem to get in the North. I’m stood feeling the relief while the market muggles run around looking angry, like it was somebody’s fault. Running with one hand on their head, like that will keep them dry.

I’m back to life “back to reality” (remember that one 90s pop-pickers?) Even feel well enough to make a few minor purchases outside. Still not at full strength but grateful for the relief and taking full advantage. Get back home, I can smell the eggs I consumed 4 hours previously. Ugh. How is that even possible? And there’s no electricity or gas. OK short walk will fix that. Right. I’m at the kiosk emptying my backpack. No wallet. Back home again, have I lost it? What the heck am I going to do I’ve no gas/leccy its Saturdaybanksshutcan’tpreparefoodnotellyorlaptophassoemonestolenitmjgklglg oh right there it is. On the settee. Twit.

Maybe I should have stayed in for a bit.

Maybe I’ll write it all down and share it with the group.

Autism Advocacy? It’s what we do.

Posted by: Emma Dalmayne

I decided today to write a list, an explanation if you will on what it means and entails to do what we do.

By we I mean myself and fellow colleague and advocate Fiona Oleary.

It means getting up after having three hours sleep and checking your emails, praying that a media or government body has answered or at least looked at one.

Emails that you spent time once again explaining what exactly GcMAF is or the make up of MMS ( sodium chlorite 28% and citric acid to activate, makes chlorine dioxide).

It’s having to put in links that explain again what those things are even though you just told them. After all they may not believe you, we are not professionals and have not got the required letters after our name that should allow us to speak out publicly on health and complex chemical formulas.

But we do.

We do because in the public eye there is no one else that do what we do.

We then make our children breakfast, put a wash on then pick the phone up and begin the rounds of calling newspapers, TV stations and politicians.

We attach pictures of children.

These children we love as our own and fight desperately to help, they are the children that are their parents nightmare.

They are autistics.

The screenshots we attach and are forced to look at repeatedly are of the injuries inflicted upon them by their parents and caregivers.

Side affects from being given potent and dangerous quack treatments in a bid to cure them of something that is not an illness, sickness nor a disease but part of their very neurological make up.

We tell our own children to hush now, we are on the phone.

We beg people to listen to us, to care about the children, innocent victims and cogs in a money making machine.

Sometimes we get lucky and a newspaper follows up giving much needed exposure and raising public awareness about these abusive treatments.

More often we are told that there’s no interest, that if we hear of a case study where a parent will speak out on using this then to contact them.

We know it will unfortunately and tragically take a child’s death to make the government move on a legislation to make it illegal to use these snake oil treatments on your child.

And even then they may hesitate.

We know to make this happen we need to make them care, to stop passing the buck to MHRA and the FDA.

We don’t have support or backing from prominent charities or autism agencies neither are we paid for the work we do.

After a day of therapies, school work and making dinner we settle back down to writing emails, articles to highlight and educate a further audience on these devastating invasions of privacy, physical and psychological abuse and yes sexual torture.

It is quite simply rape, (see here) anal penetration on children as young as 10 months old to rid them of mythical parasites which when they emerge are strands of the child’s bowel lining.

We fight desperately hard to stop this with excellent help from others who do not wish to be known publicly.

Other parents and autistics might I add, not agencies, charities or big Pharma.

We do not get paid we do not profit from the work we do, we are two mothers with 11 children between us some of whom are autistic.

We to are both autistic, we have Asperger’s syndrome.

This makes it hard for us to communicate with ease and the anxiety that builds to do interviews, TV appearances and speak to politicians can cripple us mentally.

We are abused, trolled and threatened on social media, called media whores and Pharma shills and most recently Fiona was called an assassin, accuse of having blood on her hands and we were both questioned as to whether we are reptilian in origin.

This should I hope show you what our daily lives are like. We stay up till the early hours working, and unable to sleep as we check on our children, grateful they were born to us and still mind blown anyone could inflict such pain and suffering on their innocents.

We need help.

We need more people to contact their media and their government.

To date we have done well but there is still so much to do.

Kerri Rivera’s website is still up and her book is still being sold, Amanda Mary still revels in the riches that have come from her GcMAF as does David Noakes.

Leonardo Edwards website has flourished despite him appearing on the BBC for the second time selling MMS.

Jim Humble has not yet decided to board his spaceship and leave earth even though he has amassed a five hundred million pound fortune from his self created Genesis Two Church.

Much more to do yet offers of help are scant.

I would like to thank Heather Beattie, Richard Johnson and William Tarquin-Scott Jackson for the help and dedication they show everyday.

To others I will not name we have not overlooked you, we simply have not named you for your own privacy.

As Fiona just said after reading this:

“ We are under attack. Because we say NO. No to abuse, trauma and exploitation”.

So please join us in saying no?

28.8.15

How to tell your kids they’re Âûtistic

Posted by: Emma Dalmayne

When our children are diagnosed as being on the autism spectrum, we go through so many different emotions, such as relief as we realize we were right and think that they may now get more help. We will later discover how hard we have to fight for it! We know our children are quirky and willful, and we believe they are perfect.

But how do our children feel? How do you tell your own child that he or she is on the spectrum?

Your child knows he is unique. He knows that he sees things differently than other children. He may have been bullied over being a stickler for the rules or for being so obviously different from his peers by exhibiting verbal or physical stimming.

I believe that the best way to tell your child is to sit him down when he’s relaxed and happy. Here’s what I suggest:

Explain that when he went to see the doctor that day and the doctor had a talk with Mommy afterwards that it was to tell you that you have a child whose brain works differently. It works like a computer, deleting some useless data but downloading what interests them.

Make autism sound like what it is: a neurological difference that might make some things a little harder. He may have to find different routes to the same destination their neurotypical peers have reached, but chances are his way will be unique and extremely well-thought-out.

There are brilliant books available, including “Different Like Me: My Book of Autism Heroes” by Jennifer Elder and “My Autism Book: A Child’s Guide to Their Autism Spectrum Diagnosis” by Glòria Dura-Vila and Tamar Levi.

My son knows he has autism. We told him as soon as he was diagnosed.

He’s very proud of his autism.

I just asked him, “What’s the best part of having autism?” He said, “Myself!”

I hope he will always be so proud. He certainly knows how to cater for his sensory needs and will go to the sensory play cupboard for play materials for tactile feedback and visual stimulation because he knows he needs that to calm him. He will get his weighted blanket if he feels the need to be grounded, and he will go for some time in the bedroom if he needs to detune.

Let your children express themselves and follow their lead. They will amaze you, and watching them grow with confidence in themselves is the greatest gift you can be given as a parent.

Educate them on great storytellers like Lewis Carroll, whose character Alice searched to make sense of her world. Let them marvel at the art of Michelangelo and Andy Warhol, and listen in wonder to Mozart: all amazing minds at work who might have had autism. People with autism can do great things; show them that.

5 Reasons I like being Âûtistic

I am a mother who’s been diagnosed with Asperger’s, and I have autistic children.

I wrote this account of positives because I believe these are strengths I have. I see too many negatives in the media about autism, so enjoy these positives and see if you recognize yourself or your child.

1. I can hyper focus. I can zero in on every grain of sand as it trickles through my fingers. I see colors brightly and instead of hurrying when I walk, many of us who are autistic might stop to examine a crevice in a wall or a spider weaving a web in a bush. I can zero in on a leaf on a tree from a distance when I look out the window of a moving train, tracking it and then moving on to the next one. I will pause to watch an ant make its way across the pavement, curious at to where he’s off to. Many of us who are autistic like to read or play video games, becoming completely enthralled and enjoying these things immensely. Crocheting, painting and anything that’s cause and effect is extremely satisfying to me because it’s constant and dependable. Visuals can be important to us.

2. I find things funny that sometimes I really shouldn’t. I love comedy though I don’t always understand it. When I laugh for seemingly no reason, it’s because I’ve noticed something you haven’t or because I’ve replayed a funny memory and felt the exact same reaction all over again. The same goes for unexpected crying.

3. I enjoy certain sounds like music, wind in the trees or the rushing of a river. I hear each note and each beat individually, the rustle of each leaf and sway of each branch. I hear every ripple of a stream as the water rushes over every rock. I hear the coffee machine, the people talking and the beat of the music playing in a crowded café. I zero in on one to help me cope with the noise.

4. I say what I think. You are never in doubt as to how I feel. You may not understand why I feel angry, sad or happy, but you will know about it! I’m honest and if I do lie, I have great difficulty with it as it goes against the very core of my being.

5. I make sense of my world by finding things to cherish and collecting them. Through homing in on that one thing, the world then makes sense to me. It’s a form of security in an unpredictable day. Anything could happen! But if I know that one thing will be in focus, I can bring it home and add it to the others, and then the world is right. I show great passion for my collectibles, whether they’re video games, books, colored glass, bottle tops or shells. It helps me cope after a busy day. Knowing the little shell I found on the beach one year ago is on a certain shelf with all my others provides security and a sense of worth.

For parents of children on the spectrum, cherish your child’s differences, stoop down to his or her level and listen to what your child is listening to. You may be surprised!

When a Cashier Went Out of His Way to Help My Child’s Sensory Overload

To the cashier named Aviv at Tesco Woolwich,

My family and I were having a busy shopping trip. My son who’s autistic was having a difficult time because your store didn’t have the right snacks he wanted. The wrapping was different and he finds change hard.

We had reached the checkout, which you happened to be at, and he experienced a shutdown that was triggered by sensory overload. All the sounds — the freezers buzzing away nearby with the 50 hertz hum, the bright strip lighting flashing 60 times per second, a baby crying, people talking — as well as bright packaging and smells from the bakery caused him to sink to the floor and cover his face with his hands. He does this to help ground and regulate himself; the ground is solid and cool, and when everything else rushing toward you seems too much, it’s all we as autistics can do.

People often believe that children they see lying on the floor silently are having some sort of tantrum and mutter that they should be made to get up.

But you didn’t. You came from behind your register and gave my son your chair while speaking in a low tone. You didn’t judge, and when I said, “Thank you,” you replied you would do the same for anyone who needed help. That it’s just the normal thing to do.

But you see, it’s actually not. Many times we are judged, and I wanted to say thank you for being so helpful. It’s great when someone goes out of their way to help a child with a neurological difference.

After we got home, I spoke to my son and asked if he was all right and how he felt about what happened. He said he didn’t want to get up off the floor, but he felt better once he was on the chair, that the chair spun and that made him feel better.

He said the man was kind and that people usually say he’s spoiled.

One man’s kindness in a moment of my son’s distress made what would have been a difficult experience for him much easier and more comfortable.

When the chair was wheeled around to us, I was seated on the floor, rubbing my son’s back while his little sister sat with him. The chair gave him the means to spin, which balanced his vestibular sense and gave him much-needed sensory input.

That and the donut he ate as he sat there!

If your child sinks to the floor while you are out shopping or on a busy trip, don’t immediately presume disobedience or stubbornness. They could be having a sensory overload that has caused them to shut down. Wait and be patient, because forcing them to get up will cause them to strike out, as it would anyone who’s feeling lightheaded and is being forced to move.

Give them time to balance their senses, and if you’re very lucky, a man may give them a spinning chair.

27.8.15

The Confusion Between Autism and Co Morbid Conditions

Posted by: Emma Dalmayne

The Confusion Between Autism and Co Morbid Conditions

I was asked today by a member in my support group what the difference between autism and learning difficulties. They had been informed by a well known autism charity that autism is a learning difficulty. This is not the case at all and I felt the need to break down exactly what autism is and how other co morbid conditions that can come with it can be intertwine with it.

Autism is a communication disorder which is a neurological difference that can affect a persons speech and ability to express and recognise feelings. Some of us have no speech and are considered non verbal though we may be able to vocalise noise. We may also display echolalia speech where we will echo the end of a question asked of us or vocally replay a favourite advert or phrase for comfort and an attempt to communicate.

For those of us with no or limited speech we can communicate given the right tools to use, we can be taught to use sign language, communicational apps and picture exchange communication card system ie PECS. We can if able write, type or draw to communicate as well.

We are often accused of having no empathy which is wrong, many of us have an abundance which can affect us strongly. We are thought in some cases to not have any or little when we react to things inappropriately, ie laughing when some is hurt or crying at a happy event.

That does not mean we do not have empathy, it means we have difficulty appropriately displaying our reactions. An autistic child may find a sad or angry face funny and so laugh when they hurt someone or are being reprimanded. It’s simply finding the right way to communicate with us. Visuals and timetables help to show us what will be happening as we may have anxiety over plans or show extreme displeasure when plans or routines are changed.

Routine is important to us, we need boundaries and clear plans to base our days on.

If our plans are changed we find it hard to accept and can become distressed.

Some children like to scatter items everywhere in a seemingly random fashion, others will make intricate patterns and lines becoming distressed if they are moved.

That is because these lines or random scatterings are our way of controlling our environment. To us as long as those lines or piles are there then we can try to cope with everything else.

We also may have meltdowns. Some did play these externally becoming loud and violent , tearful and self injurious. Others may sob silently internalising all the explosive emotion within. Meltdowns are normally caused by misconceptions or a build up of frustration, plans changing or anxiety related situations.

We will often collect and become quite consumed by items, subjects or people of Interest to us. We find great joy within these hobbies and unless injurious to ourselves or others should be encouraged.

Replaying of events is another thing we involuntarily have, be it a song, a situation we were in or something visual. We can experience the exact same emotion we had at that time with vivid intensity which can be distressing if it was an unpleasant experience.

You may notice your child begin to laugh for no apparent outward reason, chances are they are experiencing a memory of something very funny to them.

Sleep can be challenging as we do not produce the required melatonin to alert us it’s time to sleep. Incontinence can be an issue if the introceptive sense is affected.

Dyspraxia also called Developmental Co Ordination Disorder.

A condition that affects balance and co ordination. Someone with Dyspraxia will walk with a heavy tread to gain prop receptive feedback from the floor.

They may come down the stairs one tread at a time, as depth perception is affected.

2D vision is another sign and lack of social awareness, often bumping into things and tripping over nothing apparent to the naked eye.

Fine manipulation is also affected so a difficulty with buttons, zips, laces and cutlery.

A person with Dyspraxia may also tire easily

Learning Difficulties.

These can display as mild, moderate or severe. A difficulty with literacy and maths, a person with learning difficulties can usually learn but at a delayed rate and with lots of input and support. The more severe the harder it will be. Learning difficulties can affect all aspects of of a child’s education and they should be given a good plan possibly with a 1.1 to help them.

Sensory Processing Disorder.

People with sensory problems can have auditory, olfactory, visual, oral and tactile challenges. They may need ear defenders or ear plugs to help them cope with noise, they may need tinted glasses or a wide brimmed cap to help with visual challenges is bright lights and colours. We may get nauseated from certain smells and tastes. Some sensory seek orally by chewing or sucking and a chewy or clean cloth if they prefer can aid this.

Sensory seeking behaviour like emptying contents of bottles and flooding the bathroom are not intentionally naughty and can be helped by redirection to structured sensory experiences.

Sensory overload can occur when all the senses become inflamed at once and the sufferer may need to find a dark cool space to recover, it can be nauseating and extremely painful, best described as a migraine with vestibular disturbance, noise sensitivity and visual sensitivity. A weighted blanket and peace and quiet will help.

Someone suffering an overload may also have a shutdown where they sink to the floor, to gain priopreceptive input. The floor is solid and dependable when everything else rushes and spins around you, and they should be allowed to remain there until ready as forcing them to get up before they are ready can cause a meltdown.

ADHD

A child with ADHD may have difficulty sitting still and may fidget. They will be impulsive and have little sense of danger, they will have hyperactivity and being able to focus will prove hard. They will be adventurous and probably love climbing running and jumping.

They can however concentrate for a good short periods and learn with ease.

A child with ADHD will have trouble getting to sleep and may have difficulty awaking.

There is to date no cure for autism as it’s not a sickness or disease.

more info