butterfly minds

Archive for the ‘information’ Category

An interesting post I found via @HealthyLiving http://huff.to/1eC9vOG


A very helpful post by @PinkOddy explaining disability living allowance.

Autistic people are all weird little geniuses aren’t they ?
Autism is just another excuse for bad behaviour isn’t it ?
Isn’t it bad parenting ?
Everyone gets diagnosed with autism these days don’t they ?

NO , actually none of that is true.
The thing that had become most apparent to me over the last few months is that people who don’t have autism in their lives really don’t understand much about it at all.

But they should because awareness and understanding can make life easier for those with autism.

In this post I’m writing what I have learnt about autism and what I know from experience . I don’t claim to be an expert. I’m writing this to try and help people to gain some understanding.

I think the reason that people think people with autism are all geniuses is that many people with autism have obsessions. They will become obsessed with a subject and learn everything they can about it. For example they may be able to name every single dinosaur and tell you how much they weighed. Many autistic people also have very very good memories.
But generally autistic people vary in intelligence just like everybody else.

Autism is not bad behaviour or bad parenting. It is believed to be a neurological disorder .
The autistic meltdown is very different from a tantrum.
Most autistic people have sensory issues.
The onslaught of sensory input that most of us would be able to filter out can become too much for an autistic person. For example in the classroom there can be lots of noise , lights , things to look at as well as smells , add to this that touch can also affect them ie clothing can be uncomfortable , itchy .. It can all get to much and cause a sensory overload which can in turn cause a meltdown.
Once in a meltdown the autistic child cannot control themselves , even after the meltdown it can take quite some time for them to fully recover.
Also autistic people have problems with communication , many are non verbal and many don’t understand tone of voice , gestures , idioms , and can also struggle to verbalise how they feel , not understanding or being misunderstood can be extremely frustrating which can also lead to a meltdown. Most parents will do everything they can to avoid meltdowns and when they do happen they can actually be very frightening for the parent and the child , the parents and child certainly don’t need judgement in these situations.

It is actually not easy to get a diagnosis of autism. It can in fact take years. Because autism is such a broad spectrum and affects everyone in so many different ways its not easy to diagnose. Also CAMHS are very underfunded and understaffed as well as often being under trained. Dealing with CAMHS can be frustrating , stressful and exhausting.
So autism is never just a quick diagnosis and an excuse for bad behaviour.

Many autistic children have sleep problems. They can take a long time to settle , and often wake many times at night , again it’s not bad behaviour. There are many possible reasons for this , it is believed that in many autistic people the body does not release melatonin at the correct times. ( melatonin is a hormone that helps you to sleep)
Also autistic people can be disturbed by stimuli all around them , noises , lights , the feel of their pyjamas and find it hard to filter out these stimuli.
It’s also possible that after a day of an onslaught of sensory stimuli it can be very very difficult to switch off and relax.

Autistic people are not all lonely. Many of them actually enjoy their own company , that’s just how they are and if they do find it hard to interact socially it’s not because they ” aren’t very friendly ” it’s because it’s actually very difficult for them.
They often can’t do eye contact which can make them seem awkward , disinterested , but actually eye contact can be excruciatingly difficult for them.
Many autistic people suffer from anxiety , especially in social situations which can make these situations even more difficult for them.

Tics are another thing that many autistic people suffer with , often caused by or made worse by anxiety. They make repetetive , sometimes inappropriate noises or movements.
They don’t do this on purpose , they are not trying to be annoying. These tics are involuntary. And will often be made worse if attention is brought to them.

Autistic people and parents of autistic children don’t want pity or sympathy , or even a cure , autism is part of who they are , they want others to be aware of what autism is and to understand autism , and to support them by allowing them to be who they are.

As someone said to me tonight ”
If people were to embrace autism instead of being terrified by it, so much progress would be made. ”

Autism is not a tragedy ,
The tragedy is that there is so much ignorance around it.


O is a fiddler.
He’s always fiddling with something. It help to keep him calm and focused and also relaxes him.
He had a bag of ” fiddles” that the educational psychologist gave him , it contained ribbons , feathers , stretchy rubber things , bubble wrap , but the things that could be broken were broken very quickly and the feathers and ribbons didn’t appeal to him much .
I wanted to get him a really good fiddle because at home he tends to * whispers* fiddle with his hands down his pants all the time , not ideal.
I looked on amazon and searched autism fiddles.
It came up with tangles they are bendy twisty tangles things.
They come in a whole variety of colours and textures.
I bought O two of them. Small ones , one hard plastic one and one fuzzy.
O loves them. He’s always got one in his hand. He takes them apart and knots and tangles them up.
He joins the two together to make a big even more tangley one.
He fiddles with it while he’s on the laptop.
They are actually are very simple thing , but they have done the job I wanted them to do. They seem sturdy and they only cost around £3 each.
O really wants the hairy one and I think he will like the knobbly one.
I really would recommend these to anyone who has a child with a need to fiddle.


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.


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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