butterfly minds

Archive for July 2013

Around 700,000 people in the UK may have autism, or more than 1 in 100 in the population.

That’s ALOT of people.
And for each person with autism there is a family also affected !

ALOT of people.

Yet there is nowhere near enough understanding or acceptance of Autism.

More understanding and acceptance would make life so much easier for so many.

I saw this picture on twitter.
It’s heartbreaking , it’s also true.


People with Autism deserve the same rights and opportunities as everybody else.

The education system is hugely lacking in understanding and acceptance.

The national autistic society does great work for autism they can be found here … http://www.autism.org.uk but I hadn’t heard of them until quite recently.

Autism is of course a very very broad subject but with so many people affected by it there really does need to be more understanding.

I’ll be honest until quite recently I had never encountered autism , my ” understanding ” of it came from what I had ” learned ” from watching the movie rain man

Since autism became part of my life I have realised that I really knew nothing about it.
I certainly didn’t have any understanding of it.
And I’ve learned that most of the people around me also don’t have any real understanding of it .

I asked on twitter if people could tweet me ( without googling first ) what they understood about autism.
Not so I could belittle them for their lack of knowledge but just to see generally how much people do know about it.

I had ALOT of responses.
Most of those responses where ” not enough “

very little

” I think it’s a learning disability ”
it’s not ! I think that only approximately half of all people with autism have a learning disability

I think most people think of rainman when they think of autism

Someone who had cared for 2 children with autism / aspergers said they actually had very little understanding.

I noticed that it was mostly parents or relatives of people with autism that really knew anything about it.

It’s not the fault of these people that they don’t know much about it …. The fact is there really isn’t much information out there.
I don’t think I’ve ever seen a TV commercial about autism.
I can’t think of any posters I’ve seen around for autism awareness ,
Even when the subject of my child possibly having autism came up I wasn’t directed to any information on the subject by any of the many professionals I saw.
My sons school had almost no knowledge or understanding atall. I’m sure my son isn’t the first autistic child to attend the school.

where is the information ?

I’ve had 7 children , I can’t remember ever being given any kind of information about what to look for as signs of autism when any of them was young. Not even a leaflet.

where is the information ?

Autism is actually a very interesting subject to learn about.

And the fact is that the information isn’t really out there. Unless you look for it.

As I mentioned before the national autistic society is a great resource for information and support.

There are lots of great books on the subject , so far I’ve read raising Martians and freaks geeks and aspergers !
Next I want to read the reason I jump

People who are passionate about Autism really need to help to get the information or information resources out there.
By talking about Autism , writing about it , blogging , tweeting .
Raising money for autism charities.

Talk about the good books , the useful websites , the great blogs.

And if you haven’t encountered autism yet why not have a little read up on the subject.
One day the knowledge you gain could help you to make a difference in somebody’s life.

people with autism don’t want a cure , they just want to be accepted and understood

also while I’m on the subject , it’s not just autism. Mental health illnesses affect so many people , in so many ways and yet mental health continues to have so little understanding.
Understanding and acceptance in society makes a huge difference. We all need to be better informed.
I , for example had never ( as far as I was aware )known anybody with an eating disorder , but through twitter I have become friends with a number of people affected by eating disorders , I became interested , I wanted to know more , to be able to better understand so I started reading about the subject

I just feel very passionately that as a society we really need to be more aware and more accepting.


When me and Sue decided to do a sponsored walk in our pyjamas to raise money for the national autistic society I wasn’t sure that we would raise any money atall. I set our target on virgin money giving as £100.
But people really came through , especially the good people of twitter and so far we have raised £221 so far which I’m very proud of.
Every little bit of money raised makes a difference.
We set off in our pyjamas at noon today … Funnily enough we had bought the same pyjama tops.



We decided to walk to through and around Wimbledon common as its a lovely walk.

We walked , we talked , it was lovely , Sue lives in Yorkshire so we only see each other a couple of times a year when she comes to London to stay with her family , so it was really nice to have a kid free afternoon together just walking and talking ( and raising money at the same time )

We stopped at the windmill for a cup of tea and a cake



We even braved the ” facilities ” which if you’ve ever been to the windmill you will know is not a pleasant thing


Sues mum met us at the windmill with sues boys , to give us a little halfway support.

Then we headed back.


We walked for 3 hours.
It was a lovely way to spend an afternoon and to raise money for such a good cause at the same time.

We are going to plan the same thing for next year but we would like to get more people involved , joining in.

I’m proud of us both and I’m very grateful to everyone that had sponsored us.
It’s not too late to sponsor us , this is our link

this afternoon I walked for autism !






Hello , I’m afraid I’m coming to you with a begging bowl today , not for myself but for the national autistic society. Next week my friend Sue is in London with her boys , we went to school together about a hundred years ago so we will be getting together while she’s here all the way from Yorkshire
Sue also has a son with autism so we thought that while we have the chance to do something together we would try and raise a little money or a lot for the national autistic society.
Because they do great work for a very worthy cause.
We’ve decided to do a sponsored walk ( mostly because its easy to organise )
But because I have psoriatic arthritis I can’t be walking 20 miles or any such great distances , so we have decided on 5 miles , in our pyjamas.
It’s not mountain climbing but it’s something , and the more people that do something – the more big things can happen.
We will tweet our walk that’s exciting live action right there and afterwards blog about it , hopefully with lots of photos , although I really don’t do photos so maybe photos of sue.
It’s been tough finding anyone to sponsor us to be honest , I know we are all skint but it is a very good cause.
If you could be kind enough to sponsor us , even just a little , everything helps , we would be so utterly grateful and astonished at your kindness
Here is our virgin money giving link , I will love you forever ( or something) if you help us to help the national autistic society. http://uk.virginmoneygiving.com/8TOZERS

Tantrums and meltdowns

I was going to do some research on tantrums and meltdowns and put together a post but I came across @OAGconsultants on twitter and they have very kindly allowed me to share their post on the subject. Its a very insightful post , exactly what i was looking for ! Their website is oagconsultants .co.uk its a fantastic website with lots of information on autism,
this is the post titled tantrums and meltdowns :
I have been asked a lot recently about the difference between a meltdown and a tantrum, so this week’s blog is all about these two seemingly similar phenomenons and how to spot the differences.

As any parent, and some nonparents, will tell you the terrible twos are not an old wives tail. At around the age of two children’s development is very rapid. Children are developing into individuals they are developing an identity of their own and trying hard to understand the world they live in. They also get frustrated when they don’t understand something new or can’t express themselves or make their needs, wants and desires understood this confusion, frustration and lack of understanding results in a temper tantrum. The child soon learns that if he/she shouts loud enough or screams long enough then adults will give them what they want, or they will learn that shouting and screaming are not successful ways of achieving their goals and find an alternative.

Tantrums are led by a child wanting to be in control of a situation, they are a voluntary action/behaviour that can be controlled. Tantrums are a child’s way of asserting themselves and making sure the adults in toe room respond they way they want them to. They may seem to be very long outburst of noise, but in fact they usually only last a short time and the intensity of a tantrum is usually not as severe as you think at the time. Although we call this stage of development the terrible twos, referring to the child’s age, it is really a stage relating to the child’s developmental age and can be any where from around 18 months to 4 years old. Every parent will have a method of dealing with tantrums and this blog is not intended as a parenting manual to give advice. Some parents advocate ignoring the tantrum, others will give in to the tantrum. What ever approach you choose as soon as the child understands that they are winning the situation they will stop or if they see that this strategy is not going any where they will stop. All children have the possibility of going through this stage of development and all children will develop their understanding to some degree and understand that tantrums don’t always get the desired result and so they will find another way. There are of course some exceptions but this is dependent on levels of learning ability.

On the other hand a meltdown/shutdown is a basic brain function with no voluntary control aspect. It’s the flight, fight or freeze mechanism associated with limbic brain function. Some children/people will experience a shutdown (freeze reaction) their brain will inform the body to freeze in the threat of perceived danger (sensory overload or input overload) During the stage the individual may fall to ground and stay there until the overload is reduced. Do not talk to the individual as this will increase the load, remove sensory stimuli to reduce the load. The individual will slowly return to their normal state in time. As they begin to ‘wake up’ you will notice small changes to their body movements that are no deliberate and have purpose. As they become more responsive you can go through a known routine of questions to help the brain to become more focused. This may be about identifying individual senses; what can you smell, what can you see, what can you feel, what can you taste, what can you hear? Wait for a given response as this will demonstrate that the individual’s brain function is returning. You may have a set of questions relating to the individual; what is your name, how old are you, where do you live? The questions are not important the responses are, but try to use the same questions each time so the individual is aware of the process and the brain does not have to work too hard to find the answers.

A meltdown is also a non controllable reaction to something in the environment. But this time the limbic brain system is reacting with fight and flight. You may not be able to identify the cause of a meltdown as it could be a sensory issue that a child cannot explain, or it could be a number of factors that all contribute to the reaction. A meltdown is usually a sudden and violent reaction that may include screaming, shouting, and violence towards self or others. In some case the individual will run, they will not have a destination is mind as they are reacting by getting away from the overload. So be very vigilant as to the dangers they may encounter and try to pre-empt any flight risk; lock doors and windows if you are inside, outside the dangers are greater and the risks are higher so you need to be more aware of any triggers and try to avoid them as much as possible; use ear defenders, or sunglasses to reduce auditory and visual input.

It is difficult to spot a sensory overload meltdown but the individual may cover their ears or shut their eyes, cover their face. If this is the case then changing the environment will help; turn lights off, stop as many noises as possible, remove the child to a different area (this may not be possible) or use weighted garments/blankets etc. Once some of the sensory input is removed the brain will be able to return to its normal level of functioning and the child will be able to take control again. Some children like to be held during a meltdown so they feel secure, other will find the sensation of being touched very difficult and could increase the intensity of the meltdown, so be aware of the individual and their needs.

Another meltdown scenario is the change meltdown. As any ASD parent or carer will tell you routines and consistency are very important to an individual with ASD. If things change unexpectedly then the confusion this creates can be the cause of a meltdown. This meltdown is usually misunderstood and thought of as a tantrum. The individual wants to be in control of the situation and can control their behaviour. In fact this is not the case the change in the situation has caused a great deal of confusion for the individual and they need normality to be resumed before they can move on and accept the change. Try to return to the usual routine, to aid the individual to return to a normal brain function, then discuss the change so they are aware of it and why, reassure them that the normal routine will be resumed as soon as possible; use a picture timetable or simple language to show this.

As with the shutdown, the brain will return to its normal level of functioning in time and as this happens the individual’s reactions will be less intense and you can go through the questions sequence mentioned above.

This is a very brief look at the differences and until you have seen both tantrums and meltdowns it is difficult to spot the difference, but usually intensity and understanding are the keys to differentiate. If you would like more information then contact me.


I don’t just have ASD.

I’ve very kindly been allowed to share this blog post from
@Katesvie http://www.bluewithatouchofpink.com

I Don’t Just Have ASD

I don’t just have ASD (written by Kate Shippey)

I have feelings that can be hurt,

I have a heart that can break,

I have a mind that has trouble to think the way yours does sometimes,

I have eyes that don’t work as well as yours when I’m a little stressed,

I have ears that can be extremely sensitive to noise that seems ok to you,

I have arms that can work overtime, flapping when I’m over stimulated,

I have a torso that feels like you’ve pushed me intentionally when you just squeezed past,

I have legs that can kick out at you when you ask me to leave something, and I struggle to do so,

I have a mind and body that struggles to understand life as you know it,

I have emotions that I struggle to identify with,

I find it hard to understand the difference between morning and night time,

I find it hard to deal with children crying,

I don’t know when it’s time to eat,

I don’t know when it’s a school day or a weekend day,

I don’t like hand dryers, or loud planes, or loud trains,

I don’t like the loud noise of busy roads,

I don’t like being separated from my parents, at all, not even for school,

I don’t sleep all through the night, so sometimes I’m incredibly tired

I don’t understand toilet training,

I like everything to have an associated colour, including numbers and words,


It hurts me when someone tells me I’m different,

I cry when another child hits me for flapping,

I do see you looking at me when I have a meltdown, thinking my behaviour is appalling,

I sometimes need reassurance of a dummy, even though I hear you say I’m too old,

I know I wear a nappy, there’s no need to stare and point at me, making me feel worse.

I wish I could explain this to you, but would you have time to sit down next to me and listen?

I want acceptance and understanding from you…just as if I was your pal with a broken leg. THEN I’ll be happy.


Hoodies …. Not just for thugs

My son (8) has a purple zip up hooded top
He doesn’t wear it on the house
But he wears it Everywhere else
with the hood up
and the zip zipped all the way.
Rain, shine, or boiling temperatures
he’s in his hoody
This doesn’t worry me
And school have been letting him wear it.
But a couple of things do worry me,
we walked past a man on a warm day , O was clearly too hot.
sweating like a pig in a butchers
in fact.
but he was happy , comfortable
The man spoke up as we walked past ” get that blooming hoodie off and get in the sun”
followed by ” you should know better mum take his hoodie off , its too hot ” O may well have been too hot , he had had plenty to drink though . but he also felt safe. safe in his hoody and to him thats more important than being a bit cooler.
I also worry that as he grows older
he will be labelled as a ‘thug’ or a ‘ chav’ lazy , impolite , etc because he
may still need his hoodie then.
its time that people realised not only thugs wear hoodies.
in fact a hoodie can have a huge positive effect on a child/ person with ASD. it can help keep some of the senses out , too much noise , touch etc , therefore comforting and often avoiding a meltdown. also
wearing a particular item of clothing ie is often repetitive obsessive behaviour so please when you see a child or adult in a hoodie don’t expect the worse , don’t judge and if you see a child zip and hood up on a hot day please don’t embarrass the child , or their adult by suggesting they are incapable of judging the weather / temperature

think before you speak.


Environment and senses

this post is written by Allison of @OAGconsultants
Its about how the school environment feels to a child with ASD
This week’s blog will combine the previous two weeks. I will be talking about how the school environment can be too much for some children with ASC.

As a child I didn’t notice the environment too much, I can’t remember feeling anything going into the school hall or when using the school toilets. There was always a curious feeling of not being allowed here’ when I had to go into the school staff room, and a feeling of being in trouble’ when I had to go and see the head teacher. But that’s about it for me. When my children went to school again I didn’t give the environment much notice. I didn’t know what to look for and was more interested in the education of my children than the environment. I suppose that is true for most parents and children who do not experience the environment in the physical way that ASC children can.

During my time working with adults and children with ASC I have learnt how important the environment can be. I have also seen how a mainstream school that tells parents they understand the needs of the child don’t always understand the environmental needs. They may be referring to the educational needs (learning and teaching methods) and the social needs (friendships, rules, logical thinking). In mainstream education teachers are taught and encouraged to use bright displays to support children’s emotional wellbeing by displaying their work. There are displays covering every piece of wall space available, usually in bright primary colours. They may have pieces of work nicely mounted onto contrasting paper which are then placed on boards in a random pattern. Or they may have lots of photographs of children on an outing or doing an activity, again these are usually displayed on irregular angles. Many of them look very impressive and have taken some dedicated TA’s a long time as well as the children. For a child with ASC these beautiful and well constructed displays can be an assault on their vision. The colours can be too distracting, the placement of the work too disorganised, the contrast in colours too harsh, the whole thing can be painful to look at, but so bright that they cannot avoid looking at it. All of this can then cause a child to have a autistic meltdown, but the teachers cannot see a trigger as they are not aware that it is the room its self.

The same can happen in school halls. Generally these are large halls with high ceilings and sound echoes around the room. Children are expected to sit in this space and concentrate on the teacher or a speaker. Many children find this difficult, just sitting still during an assembly can be difficult. The child with ASC will have the added difficulty of the compounded assault of sound in their head due to the echo and acoustics of the room. Again this can lead to a meltdown with no obvious trigger. Alternatively if the room is empty the child may enjoy spending time in the room playing with the acoustics, shouting, spinning, running, stamping hearing the different sounds reverberating off the walls and ceiling. During this time the assault on his hearing is not painful as he is in control of it and he is not expected to focus his attention onto the speaker at the front. If the hall is used for PE then teachers can have the same problem trying to get the child to concentrate due to sounds bouncing around the space. Another use for school halls is for lunch times, this time the noise level and the acoustics play a big part in the affect the space has on the child with ASC. Depending on the sensitivity of the child’s sense of hearing and the power of other senses (taste, smell, sight) this level of noise may not be a distraction, but if the child is not interested in food or understand the importance of food or the feeling of hunger the noise may be too distracting to enable him to eat.

Speaking of smell (scent) again these can be very distracting for some children. If the classroom is close to the kitchen then the smell of cooking food may be the cause of a meltdown, or if the toilets are even slightly smelly the child may refuse to use them, resulting in pain and discomfort. If the teacher or TA changes her perfume or personal scent in any way this can create a difficult situation for the child who is trying to understand how she looks and sounds the same but smells different. This again can be an assault on the child’s sense of smell and cause a meltdown with no apparent trigger.

There are so many environmental factors to consider if your child has ASC. Flickering lights, sun through the windows, temperature, sounds, smells, routines, and changes. It is difficult to imagine the effects all of these have on a child (unless you went through it yourself). As a parent you will understand the consequences of getting it wrong, but it is still difficult to comprehend how it might affect the child, and yet some children thrive and cope in these ever changing environments, and we expose children to these environments forgetting how much impact they may have.

It is difficult for any school, classroom, home, shop, station or anywhere to adapt the environment to meet the needs of everyone, some children need a high level of stimulation to enable them to learn others need very little stimulation, and there is no way to accurately balance it. but as a parent you can understand the difficulties and ensure that the school your child attends has some understanding before they start.

When you visit a school don’t just ask about learning styles, teaching abilities, access to alternative curriculums, availability of support, training and understanding of the condition and behaviour policies (these are all important) but you also need to know if the toilets that are cleaned every morning and evening, but used by 60 children throughout the day will still be smelly, if the area your child will be working in is highly visual, remember it can be distracting or even painful for your child to work in that space all day, if he is expected to eat his meal in a very noisy and crowded hall, this could mean he may not eat at all. Go into the toilets towards the end of the day on a classroom visit and experience the aromas, ask to go into the hall to experience the acoustics, make sure the school can provide a time out space for the child so he can self regulate his senses overload when needed. Ask if the lighting can be adjusted as bright lights can be painful.

They are simple alterations that can make a big difference to your child’s ability to learn. Don’t be afraid to ask.



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