Echolalia

Echolalia (eco-lay-li-ah) is possibly an unfamiliar term to you. It's not a term widely used in general discourse. It's a term specific to language development and is quite common among children with autism.

Source: here

Echolalia refers to a way of learning language and involves the automatic and involuntary 'echoing' and repetition of words and sounds. It is normal and typical in language development of toddlers up until the age of around 30mths. You might notice that babies repeat sounds they hear and toddlers repeat what their parents say without an understanding of what it means or what the correct context for the word is. Or if you ask them a question they might repeat the same question (or part of the question) back to you. For example, 'What are you building?' The child says 'Building.' Or 'It's time for bed.' The child says 'Time for bed'.
These are examples of immediate echolalia, where the repetition occurs immediately.

If echolalia persists beyond the toddler years, then it can be a sign of autism or other developmental concerns (it is unlikely your child has autism should this be the ONLY characteristic they display).

Why do children mimic language?
There are a number of reasons why children might mimic language. Firstly, children with ASD can have incredible difficulty with language development particularly understanding the context of language. If they do not understand context, then their comprehension is significantly impaired. When children mimic language, they are showing they can hear properly and produce correct speech sounds but not actually comprehend the full meaning of the words and their context. Repetition of language helps the child begin to process the spoken language but it may be a very long time until the child fully comprehends what is being said. Immediate echolalia can be an attempt at conversation ( in a very stoic way) or the repetition can be calming agent in reducing anxiety as it is predictable.

When E was younger, driving in the car was a nightmare. He used to notice any truck or bus that went by and we would go through this speech routine.
E: Mummy, its a truck, a truck, a truck, a truck. (high pitched, horrible tone)
Me: Yes, E, it's a truck.
E: Yes, E, it's a truck.
E: Mummy, it's a bus, a bus, a bus.
Me: Yes, E, it's a bus.
E: Yes, E, it's a bus.

If I didn't repeat what he said, he would say the same words over and over again, getting louder and louder and more agitated. The call and response was a complete circuit and he could not cope if we didn't complete the cycle. When you are driving you see lots of trucks, buses and trains, so it got rather tiring and distracting and made it virtually impossible to have a conversation with anyone else in the car. E however, liked the interaction this way.It gave him predictability and comfort but it did nothing for developing his language and comprehension.

Source: here

 

There is a second type of echolalia called delayed echolalia. This is when words or phrases are repeated later than the immediate context. For example, I had warned E's younger brother away from the hot tap in the bathroom by saying 'Judah, hot.' For a long time after this, E would point to the hot tap and say 'Judah, hot.' Once, E wanted a box of toys from a top shelf and I pointed and said, 'Oh, you want this?' For a long time afterwards, E called that particular box of toys 'this'. He did not comprehend the original context of these words but was able to remember the words. Thus, he associated the word or phrase with the object.

Children with delayed echolalia will often learn language in 'chunks'. Learning whole sentences or phrases but not understanding the meaning of the separate words or even that the words can be separated!!

For example, in a matching game we would play, this conversation would follow:
Me: Where's the horse? What does the horse say?
E: Neigh
Me: Good boy.

E learnt this conversation and whenever he would play this game by himself, he would repeat both parts of the conversation, word for word. He didn't really understand what was really going on, he had just learnt the whole conversation. It can be a form of self-stimulatory behaviour (behaviours which stimulate the sensory system) and the recitation is purely for the satisfaction of the child.

Echolalic phrases or words can also be quite revealing about a childs' needs or emotions if you pay attention and are able to work out the original context. For children who cannot verbally express themselves otherwise, it can be essential to work this out. For example, a child might say 'the park is closed today', when something disappointing or sad happens. This is because, they identify this emotion with a time they could not go to the park because it was closed. They are not able to say they are sad and might say this in a completely different context like not being able to go to Grandma's house. But it tells you what they are thinking or feeling. Of course, it can be completely bewildering for someone who does not understand this original context.

I will follow this post up with ideas and strategies for working with echolalia and how to help your child move past echolalic language to self generated language. ( I write all of this through what I have learnt as a mum of a child with echolalic tendancies not as a speech therapist).

Transition to School: part 1

E begins school next year. This is a significant transition for any child but if you are a parent of a child with additional needs this transition is MASSIVE.

I don't think most people appreciate just how big a deal this is for parents and the child. I certainly had no appreciation of it until I began walking in these shoes.


Source: here


My piece of advice if you are speaking with a parent who is going through this - please don't downplay their feeling or offer platitudes.
 'I'm sure they'll be fine.'
'He's come so far, it'll all work out.'.
These words do nothing to address the pit of fear at the bottom of my heart and stomach. Or the heartache I feel when I begin to contemplate just how vulnerable my little boy is. Or the constant wondering of how he will cope or just simply understand what is going on in a classroom.

Don't get me wrong. I certainly experienced some emotion when my first child (neuro-typical) started school. But it was different. He was independent. He could express his needs well. He was social. He understood what was happening and the transition that was occurring. Yes, it was a little difficult to let go..... but nothing compared to the overwhelming feelings of the present.

I would never say I love one child more than another. But when you have a child with additional needs it is true to say the love is of a different quality. There is a depth and rawness to this love that is hard to put into words.

 Why or how is it different?
I guess it's different because you have gone through so much grief, pain and anguish with this child. You have fought so hard for them. You have had to do multiple weekly therapies with them for the last couple of years. You have had to sit down and work with them at home for a certain purpose or goal. You have to wrestle with your own emotions of anger towards your child when the frustration gets too much. You watch them struggle with basic developmental tasks or milestones. You celebrate with them small achievements and progress which almost goes unnoticed in other children. You see how they don't understand the world and it tugs on your heart everyday. You try so hard to understand them and connect with them. When so much of what you expect in childhood development doesn't happen.... then your love changes.

 It is more vulnerable. More raw. When you cuddle this child and hold them close you find yourself apologising for the life they have to lead, for the challenges they face that you never wished for them but you have to stand by and watch them struggle regardless.  The realisation that you are your child's advocate in a way you will never have to be for any of your other children. Releasing this child into the school system is a big deal. Especially when it is hard to trust that they are really going to be ok.

If we parents felt more teachers understood and were respectful of this emotion then maybe we'd find it easier to let go. When the road has been tough and the journey long, one bump can feel like a mountain.

Source: http://www.empowernetwork.com/ardivjauhari/blog/the-journey-to-success/

Sensory input and sensory processing

Source: http://vimeo.com/52193530

Sensory Processing Disorder (SPD) is a neurological disorder which prevents information received by the senses to be processed properly. This includes the five senses (touch, smell, taste, hearing, vision) and the two other lesser known senses  - the vestibular ( the sense of movement) and the proprioceptive (the positional sense).

When a child suffers from blindness they receive no information in regards to their vision. This is not the case with SPD. The information is received but there are difficulties in the processing of this information in the brain and how to make sense of the information. The information is often processed in a way that causes distress, discomfort and confusion (Psychology Today: The Autism Advocate, 2010).

Think about how a baby explores the world. It's all about sensory information. Touch, smell, looking and reading faces, chewing, fists in the mouth, toys in the mouth, reaching for things, the startle when there is a loud sound, knowing the sound of particular voices. For kids on the spectrum (and those that have SPD) all this information might be confusing to the baby rather than helping them make sense of the world. This confusing information results in these kids liking things which are familiar, predictable, which bring routine and in turn, comfort. OCD tendencies (obsessive compulsive disorder) are also seen in kids with SPD or ASD as a way of reducing their anxiety.

Here is a video which a friend of mine posted on Facebook recently. It might help bring some understanding and empathy to what a fairly normal situation (a visit to a shopping centre) can be like for someone with ASD or SPD.

I felt like escaping this scenario when watching this, so I guess we could all understand the need for these kids to escape or meltdown!!

These situations become more complicated when there is a language and communication delay. When they begin to feel stressed or anxious, finding words to express this is difficult. I notice this with my son. In a calm environment he is able to label body parts. But when he is in pain ( remember even  information from their pain receptors will process differently to ours) he often cannot express where he is feeling pain. It is almost like the extra stress and anxiety and the inability to process the information from the pain receptors shuts his ability to communicate off. It is all too much.

If you couldn't communicate through words in that video, what would you do?? Yell and scream, perhaps? Roll on the floor with your hands over your ears?? Run away from your parents who are making you go there in the first place??

When all the information they receive gets too much and their arousal levels are rising, this is when they experience sensory overload. This is not unique to kids on the spectrum. We all have probably experienced this at different times in our lives in different scenarios. But for these kids, they experience it nearly every day.

What are kids sensitive to?

Source: http://wizzkids.wordpress.com/2011/08/12/sensory-overload/

There is a huge range and like most things it varies from kid to kid. But common things are light, sound, touch, taste, texture (like of clothes).

Signs that children are moving towards sensory overload:

• easily distracted
• cannot focus on a task
• oversensitivity to small things
• hyperactive
• withdrawal
• shuts down - vacant
• hands over eyes or ears
• clumsiness
• unable to calm down
• unable to stop behaviour
• delayed motor skills
• delayed speech skills/acquisition
• refusal to do certain activities

How can we help?

• A Sensory Diet or implementing sensory based activities will help regulate a child's arousal and over the long term help them process some of this information better.
• My son wears a hat almost all the time. This helps with his light sensitivity and it also gives a way of withdrawing from social situations where he is feeling overwhelmed. It has been very effective for us.
• Some kids will wear ear muffs, plugs or phones when they are out in situations that are too noisy for them. I am considering keeping some available for E as some places he finds noise too overwhelming.
• Don't touch kids with ASD or SPD until you get to know them and find out what their sensitivities are. Don't demand a hug or a kiss from them. This can put them in very uncomfortable space.
• Use visuals to help kids process verbal information. Put routines into a visual sequences of events. This can be a highly effective way of lowering anxiety as they can predict the day or the order of events.
•  Social stories (stories with visuals) explaining changes or new things are also a very useful tool. Kids with autism have trouble understanding big picture stuff. They struggle with context. Thus, if they can process the order that things will take place then they will more likely cope better with transitioning from one task to another. They will be more relaxed as they know what is coming next.

I really should have written this post prior to 'The Sensory Diet' but hopefully it's helpful nonetheless.

The Value of Phonics

This is the approach year to school for us. So it means lots of focus on literacy and early writing skills. E does not know his alphabet and until recently did not really have a concept of letters and sounds and words.

We have started working on a phonic alphabet with him - focusing ONLY on the sounds and not the names of the letters. At first I wasn't sure about this wisdom of this as when someone asks him to identify a letter he is not aware (at this stage) that it has any other value except a sound.

But we have been working intensively with him (20min per day) getting him to learn his sounds. It hasn't been easy, but now that he is starting to remember them and identify a handful of sounds without prompting, I am seeing the benefit of this approach.

1. It creates clarity not confusion. Giving a letter two values would be confusing at this stage in his development. Obviously, for someone who struggles with basic language development the less confusion the better.

2. I can see how he might learn to read!! This is actually seeming a real possibility this year!! Once he knows the sounds of C, A, T  - he should be able to read CAT. If he knew the names of the letters he would not necessarily be able to read this.

What has worked for us so far:
Every day we sit down with a laminated sheet of the alphabet which he can trace the letters with an indication where to start his writing. E loves writing and tracing. So it means he practices writing letters at the same time as he is learning the sounds.

We use picture prompts of the sounds i.e. a picture of an apple for the sound 'a'.

We use a phonic alphabet song which his speech therapist has produced. Unfortunately I can't share with you this wonderful resource. But even a quick search on youtube has possibilities. I would just be careful of ones that use both the name of the letter and the sound as it gets confusing. This one doesn't completely avoid the issue but it does better than some others. Let me know if you know a song that avoids naming the letters.

 

 

We have played the song over and over again in the house and in the car. The pictures used in the song are the same pictures used as prompts when we do our 'table time'. This has been invaluable. The picture prompts brings the song to mind which then brings the sound to mind.

 

When we first started doing these exercises, he was associating the picture with the letter and was calling the letter an apple or a snake. But with persistence he is learning his sounds and now a number of them without prompts.

On the road to school

I just had a meeting with an itinerant support teacher for early intervention (did you know they exist?) My meeting was concerning the options for E next year as he begins school. At this stage we are looking at Department of Education options. 

She was lovely and helpful and nice to know there is someone you can email or ring with logistical questions regarding the placement of kids with additional needs in schools. She will also be a bit of a liaison between me and my local school. 

I have been informed from a few different sources that because E has a diagnosis of autism he will qualify for additional state funding. Ain't necessarily so, folks. If your child has a mild developmental delay or in E's case a severe language and communication delay - then they do not qualify for additional funding. Any support/aid that the school can offer comes out of what is already allocated to the school. 

So my understanding is that E will receive very little extra support at school. 

This is very hard to hear. My child does not need to be in a special school or a support class. In fact, these will most likely be detrimental to his learning ( learning behaviours of other children etc). But I know he will be completely lost in a classroom. He will struggle to follow the first instruction, let alone the second or the third. He may not be intellectually disabled but his lack of comprehension skills will probably end up producing a similar outcome. If one does not understand what is being said, then they cannot perform the tasks. Why does this not qualify for funding for support?????

Helpful resources part 1

I will pause from the information overload for this post and draw your attention to resources that have been helpful to me or have come highly recommended.

Gen Jereb: 'There's a Traffic Jam in my Brain.' 

This has been one of the most informative and helpful courses I have done. The course is 7 modules (approx 7 hours) and is available online throughout the month of October. You can watch the videos when you are able. The cost is approx $170 but I think it was money well spent. (My husband also watched it with me)

What did I like so much?

• There was heaps of information regarding how our bodies and nervous system function and what their needs are.
• There was wide application - not just for kids with autism - but many kids would benefit. It was useful for teachers, parents and therapists.
• She is an engaging speaker
• The songs were a bit daggy but fun.
• She clearly LOVES what she does and has heaps of experience in the US and Australia
• Lots of practical applications.

You can see a 10min snippet of her here.

'The Out of Sync Child' by Carol Kranowitz is on my reading list and comes highly recommended. It looks at the issues of sensory processing disorder and how we can help our children organise sensory information.

'No more meltdowns' by Jed Baker is a helpful book written to help you examine the causes behind behaviour. Finding the causes of behaviour will help you prevent the behaviours in the future. I have read parts of this and found it quite practical.



Sue Larkey
Sue Larkey is a primary school teacher and a special education teacher. She has a wealth of resources, information and experiences. Her website is a great source for resources for both school and home. She also organises workshops across the country with the expert Dr Tony Attwood. I have attended one of these workshops and it was well worth my time.


Lifestart
This group is an early intervention service for ALL kids with additional needs (not just ASD) which we have only become members of this year. In some ways I wish we had used their services earlier - but you can't do everything!! They have a number of centres around Sydney and are an incredible family friendly and accessible service. They offer group therapy with individual plans and sometimes one on one therapy. They offer services in your home to help with behaviour management. They offer open and supported playgroups to kids with disabilities They offer ongoing workshops and courses. Their support is wonderful and offer many opportunities to connect with other families. We have our son enrolled in their transition to school program (which runs all year!!) and are thrilled at what they are offering.
At a small cost of $275 per term this is a wonderful service and comes highly recommended. (Remembering one 1 hour session of therapy will typically cost $120 or more).
If other people are looking for services to support or donate I would love you to donate to these guys!

Preventing the Meltdown: A Sensory Diet

Please read my previous post to make sense of this one!!

In my last post I mentioned that a sensory diet was an important intervention strategy for kids having difficulty regulating their arousal levels.

It is termed a sensory diet as the intervention is of the sensory nature (the senses) and a diet because like eating, it needs to happen throughout the day at regular intervals to be most effective.

Disclaimer: I have been terrible at implementing any kind of consistent sensory diet with my child. Doing anything consistent with 3 young boys is a weakness of mine. So I cannot claim great success with this intervention but I have seen some benefits even when it is used inconsistently!

It's purpose:
The purpose of a sensory diet is to stimulate the nervous system which regulates (raises or lowers) the arousal levels in a child. It helps stabilise the emotions of the child and in turn hopefully prevent a meltdown. This of course is beneficial to the child and all those around the child.

Source: Sensational Kids OT

Important:
Creating a sensory diet is a uniquely personalised intervention. Every child is different. Their needs are different. Some children have naturally high arousal levels and some children have naturally low and sluggish arousal levels. Every child will respond differently to different sensory input. What might work for one child will not necessarily work for another. Please if you think your child would benefit from this type of intervention, then you need to see a good Occupational Therapist. I do not claim to be any expert on this topic. I am only sharing what I have learnt through experiences, conferences and courses over the last 2.5years.

How does it work?
The nervous system is a complicated beast and I don't pretend to understand even the basics of it. See the SPD website for some more in depth information. Kids with ASD or SPD (sensory processing disorder) often have proprioceptive and vestibular disfunction or weaknesses.These have to do with the use and awareness of our muscles and balance and spatial orientation. They are fundamental to childhood development and if not developed properly will effect higher order skills such as fine motor, concentration and even vision.

Activities in a sensory diet can have a two fold effect. Firstly, they will have an immediate effect on arousal levels and help a child regulate these levels throughout the day. A good OT will see the bigger picture and put in place activities which will not only affect the child's day by day functioning but will develop and correct issues with the procprioceptive or vestibular systems and therefore having a longer term effect.

What types of activities could be involved:

• Blowing bubbles, whistles, harmonicas (deep breathing is very significant for regulating levels)
• Crawling like a snake or on all fours
• Jumping on a tramp or off lounges (yep, perfectly acceptable in our house)
• Riding a bike
• Obstacle course type activities - emphasising keeping the child low to the ground
• Listening to music
• Deep pressure like a brush on the skin (there is a particular brush and a particular method for this one)
• Visual toys like liquid timers see here
• Squishy or stretchy toys see here.
• Squashing your child between cushions
• Jumping on your child while they are under a bean bag (carefully!!)
• Weighted blankets or vests

Source: http://www.sensorysmartparent.com/blog/

                           

I have tried a number of these and they do work -but they only work while your child's arousal levels are not too high. Once they reach overload point, these strategies don't work as their system cannot take anymore input until they start to calm down. So the idea is to do a variety of these things (what the child responds to) throughout the day to prevent them from reaching melting point!!

When E starts to get a bit 'edgy' (each child will have their own set of symptoms which show this), if I take the time to do some of these activities with him, they will often stop his arousal levels from escalating.

Other kids can benefit too!
Lots of these activities can be beneficial to all children, not just children on the spectrum. Kids often have trouble regulating their emotions and arousal levels. So particularly, if you are a teacher, working with children or a parent, doing some of these 'fun' activities with all the kids will probably help all of them calm down, focus and concentrate better for the tasks at hand.