I'm going to split this most important of all sections into the following few issues - Behaviour, Sensory Difficulties and Communication and Everyday problems. A whole book could be written on each of them, and as you will find out if you haven't already, whole books already have! You could fill libraries with book on autism and communication and there are literally hundreds of books on behaviour by both professionals and parents. But these are the issues that I hear again and again from parents that concern them at home, and some starting ideas that I feel can help.
Behaviour, Sensory Difficulties and Communication
By this we mean behaviour by the autistic child that is angry, upset, aggressive or 'challenging' to others in some way. This can include meltdowns, shouting, crying, cursing, hitting, pushing, biting, throwing objects, deliberately breaking things, running away, refusing to walk, lying down in the middle of shops and UTTERLY refusing to move on, insisting on watching the same film endlessly, loathing having to play with other children except close family members…any of this sound familiar?
I'm going to say he rather than he/she or it from now on, as it's easier. Apologies if you have a girl!
What can you do?
Inevitably this is much too simple …but try to work out:
1)what the behaviour achieves for the child, (does he get to avoid something he does not like eg noise/smell/crowd/touch/demands to do something he fears, as he knows from experience he will be removed from the situation)
or 2) what prompted the behaviour? (is this an overload from too much sensory or information overload? Is he too stressed by too many demands and too much language that he does not understand? Is he in pain? Could he be constipated? Or is he so hyperactive and short of sleep and overloaded that he is completely worn out?)
Firstly about 1). Does he get to avoid something he fears?
Educate yourself about common sensory problems for children with autism. If you start to understand how they are experiencing the world, often experiencing everyday sounds, even light touch or a kiss, flickering light, the feel of clothes and especially socks and seams and labels as sheer pain, then you may feel less exasperated at their fearful reaction to some of these things. If you knew how distressing a drop of water on their clothes feels, you would be less surprised that they may try to remove them several times a day… If you knew how untogether and unbalanced their world felt and how spinning and rocking and jumping made it feel less so, you might invest in a mini-trampoline rather than getting furious that they keep breaking the sofa and the beds…Make their lives easier - soft clothes, easy to remove, if you find something they like to wear buy a whole load in one go! Invest in a good set of headphone or ear defenders if they often put their fingers in their ears - it may make going outside much more bearable for them, do you have fluorescent lighting that flickers and affects him?, Recognise that heavy pressure, big slow hugs, rolling up tightly in a duvet, etc may be hugely relaxing for your child. Weighted blankets can calm hyperactive systems and induce better sleep.
My first suggestion - go to the website www.sensory-processing-difficulty.com <http://www.sensory-processing-difficulty.com> and start with their checklist. I think you will immediately recognise many sensory difficulties you had no idea that your child suffered from.
Sometimes you can distract them slightly from their discomfort with food, music or a game on your mobile phone for example on a noisy bus, but very often knowing what to avoid is just as important.
2. Understand that anxiety is a huge factor for our children and not knowing what is going to happen is the worst thing for most, but not all, of our children. (A few perversely get more anxious if they know what is going to happen!)
Make life predictable and easier to understand with the use of visual supports. You can find examples of visual symbols on websites about PECS, or download free ones at www.do2learn.com <http://www.do2learn.com>. You can use a digital camera and print off real pictures of his school, pool, playground, home etc. Google Image is a great source of symbols nowadays. If you want flexible systems then a strip of Velcro on the fridge and laminated and velcro'd symbols that you can put up in various orders are very helpful.
If you have a visual schedule on your wall or fridge that shows what will happen that day in a row of easy to understand pictures or signs, he will feel much better.
For example, your signs might read from left to right:
Clothes on, Breakfast, Bus stop, School, Swimming, Home.
In the bedroom, you could have a row of signs that show how to get dressed:
Old clothes off
Then pants - socks - T-shirt - trousers - jumper - shoes
You could lay the clothes out in this same order, left to right, on the bed so that he knows what is happening, and can eventually get the hang of it himself.
In the bathroom, you could have a set of visual signs that show for example:
Seat up, trousers and pants down, pee in toilet, pants and trousers up, flush toilet, wash hands. (you may then need a set of signs to show how to wash hands above the basin)
You can use visual symbols to explain situations where he is going to have to wait a bit. For example
First Egg Then Ice cream
First Bath Then Storytime
First Shopping Then Playground slide
Symbols on the move -
If you have an Iphone or an Ipad, these are great devices for having stored pictures or symbols that you can use either to show your child what you are planning, or for child to indicate to you if he is non-verbal what he has in mind! For a great free download try www.miasapps.com <http://www.miasapps.com>
Or is it point 2?) What prompted this behaviour? Is he overloaded?
We've talked already about sensory overload so you will understand this one by now. But remember a child might be able to tolerate a few minutes of a noise they detest but not half an hour. They may be able to stand water one day but not the next. Coping with having to touch something sticky might be just tolerable when calm but utterly impossible after being in a room with a flickering light for 20 minutes. Standing in a bus queue with other people bumping into him may be an overload of unthinkable levels..
The other massive overload - and this is the big one - is language and communication.
Our children find it extremely hard to decifer language. When they are stressed, they find even the simplest language hard to follow. So make your language SIMPLE. One step sentences. Not ' Come on hurry up we're going to be late you need to put you coat on right now or we'll miss that bus won't we, and you don't want that do you?' Just 'Jack, coat on.' And when he's got that part, 'Coat on, then bus' might be acceptable for a child that can cope with a 2 part instruction. But keep it simple - It makes an amazing difference.
Keep your tone of voice light, encouraging and never blaming or exasperated. (well, not never, you're not a saint, but as little as you can, it makes life so much worse for your child) Try to remove all sentences that start with 'Why do you…..?' It's not helpful, he has no way of knowing or explaining just will feel vastly discouraged and upset by your disapproval. Remember - You are the calm sea that makes your child's life safe and tolerable - if your anxiety levels are out of control, he will not be able to progress. Someone has to be appear to be completely calm and unfazed by what is happening, and giving off the air of being able to cheerfully make it all fine again. Find a mantra that works for you 'I am the calm sea'… or counting calmly in your head (not aloud!) up to five, rather than snapping out some irritated comment at a bad moment. Make sure you as the parent are the parent who de-escalates situations, not the one who escalates them out of your own frustration. You only get to pay the price later and you're not the only one.
Do not punish your child by smacking, shouting or violence. It does not work well with any child but especially not with children with autism, and is incredibly unfair on a child who is generally behaving in a certain way because they do not understand, or because they have through no fault of their own, been overloaded.
Don't meet your autistic child from his stressful day at school or nursery with a long list of questions 'How was your day?' 'What did you do today?' 'Who did you play with?' Was it fun?' These are baffling and stressful questions for a child with autism, even the very most able ones detest this sort of questioning. I can guarantee you will never get a satisfactory or honest reply to this sort of question. Most will ignore you, get vey angry or learn to grunt OK to get you to back off. Instead just meet them calmly, with very little but reassuring language, just for example 'Hi there. Let's go home now'
School is hugely stressful for many autistic children and they generally need downtime afterwards - time alone with a computer or a favourite pet for example. They do not need playdates that they have not asked for or having to play with siblings forced upon them immediately after school. Make sure they have time to calm down at intervals in the day so they can try to manage their stress loads.
Keep the environment quiet and orderly. Do not tolerate your other children teasing and provoking your autistic child at home. They need a room or a space where they can get away completely if possible when they need quiet and no people .
Keep your rules and daily habits simple and consistent. Many tantrums are because something that was allowed one day by one person is now apparently not OK on another day with a different person. Autistic children put huge importance upon tiny details and changes in small things are vastly upsetting to them. If relatives undermine you all the time and constantly upset your child, or try to change your rules, try to explain his disability to them and why he needs certain things in a certain way. If they cannot respect this, you may have to consider how much they are needed in your life at this point, or how often they can be around. A supportive extended family is the best thing you and your child can have, but one that makes progress impossible can be unbearable and this is a decision I see our families having to make all the time.
Help your child with their language development. They are not interacting with other children much of the time - they are often actively avoiding being around any language. If they do not speak, people often do not speak to them much and then the language they could be understanding falls further and further behind. So even if they do not speak, make sure you are spending lots of time with them looking at picture books, saying the names of things out loud, making sure they know the names too 'Touch the book' allows them to show you that they know the word even if they cannot say it Books are expensive - get them from the library if your child is not going to rip them to bits.
Try watching BBC TV and website 'Something Special' which is fun and also teaches basic Makaton signs. You and your child, if non verbal, could learn simple Makaton signs such as home, pee, drink, eat, sleep, more, etc.
There is a good CD-Rom called Speaking for Myself Plus. The home version is not expensive - it is very good for encouraging very early language and sentences and teaches also lots of Makaton signs. Buy online.
Another excellent but much more expensive piece of speech and language therapy software is a programme called 'Lexion' which you could use for years at home to really develop language and listening skills. Buy online.
Singing and music are great ways to develop language too.
If your child is at a very early stage of learning and you cannot get his attention at all for learning, try a very simple technique. Teach the words 'Do this!' Get someone to sit or stand behind the child. You say 'Do this!' and then make one clear action such as clapping your hands, or patting your head. The the person behind the child holds his hands and make him do the same action. You then act completely delighted and gives him tons of praise. Yes! You clever boy! Wow! Fantastic!
Then another 'Do this!', and the same action a couple of times until he's got it, lots of praise each time. If he doesn't do it, then the person behind gets to
hold his hands and clap them again, lots of praise again. Etc. Most children get this fairly quickly and are delighted to have found they've done something successfully If it's not working, leave it cheerfully and try again another day.
Once the child has understood the Do This! Instruction, you can use it for lots of new copying skills and even for language eg Do This! Followed by saying 'bu bu bu bu bu' or AAAAAAAH! Dada is easy to teach this way, as is Mama.
Teach the word ' more', and blow some bubbles with a bubble tube (cheap to buy in any poundstore). They learn, other children can model this, that saying more means you'll blow more bubbles. Bu-bu is a good approximation of bubble too.
The word 'more' is really useful around meal times, for you to say he must eat more, or for him to say he wants more.
For more able children, it is the social situations that they are unable to understand, the reading of other people's emotions and points of view, the point behind traffic lights that turn red, the need to share or wait, the coping with anger, the irritation of homework that should have stayed at school, etc.
Social stories can be a good way of tackling these issues - ask Julia for some examples via email or see the NAS factsheet on social stories.
Waiting and understanding time are also difficult areas - teaching a child as early as possible to read a watch, understand a calendar etc are valuable tools in helping them understand when something will happen, when words like 'in a few days' or in a 'while' or 'in a minute' are driving them crazy.
For less able children, tools such as large sand timers can be helpful to indicate a 5 minute or 1 minute wait etc.
(See how sensory difficulties and communication all got swallowed up in the behaviour section there?)
So now straight onto Everyday Problems.
Toiletting - a big one this for most parents of young children with autism. Generally our children are in nappies longer than most children - don't stress too much, they generally get there in the end, often around 4 or 5 years. If they're not ready for potty training, leave it for another few months and try again. They'll probably be in night time nappies for some years longer than day time nappies.
The NAS has a good factsheet on this that you may want to read.
Lots of boys don't want to pee standing up - they see their mums sitting on the toilet so that's what they think they should do. Brothers, dads and uncles need to be prepared to be seen peeing to get the message through sometimes! A bit of floating breakfast cereal like a cheerio in the loo becomes a good game. If you pee on it standing up, it goes jumpy jumpy etc. Make it fun.
If the noise of the toilet flushing is off -putting and scares him, then leave the flush for another month. One skill at a time.
For potty training, the trick is just lots of repetition. These are children who don't like any change much and having always pee'd and poo'd in a nappy, they aren't going to choose to do it another way happily. You may have to pick a warm day, remove the nappy for the whole day and take the child to sit on the potty for a minute evey 30 minutes and hope to catch all the pees and poos. Explain that the pees and poos like to go in the potty. Lots of praise, sweeties, whatever works any time a pee successfully ends up in the potty. Lots and lots of repetition. You may basically find it easier to put aside a couple of days just to do this if you can. Or if you are really busy, you'll just put the nappy on to go out and that's where all the pee will go immediately and you'll be feeling you're back to square one. If they are really reluctant, you could try getting them to go and choose the potty in the shop with you, or choose a special child' s seat to go on the toilet instead.
Lots of our children suffer from chronic constipation and gut issues. Look up autism and gut disorders on the internet to learn more. A chronically constipated child is a child in pain who will really fear passing a bowel movement and the pain it will cause. If your child appears to sit awkwardly or strain abnormally or not poo for days at a time, or conversely only appear to have diarrhoea (this can be a sign of constipation where only the diarrhoea can get past the blockage), then you really should insist this is investigated by your GP/paediatrician. Some parents choose to remove gluten and milk protein(casein) from their child's diet and there is a lot of anecdotal evidence that this can help. Nowadays more parents are choosing to use laxatives such as Lactulose and Movicol (on prescription only).
Faddy and restricted diets
Autistic children rarely eat a wide range of foods and some of them severely limit themselves to just three or four foods. This causes enormous anxiety in families. Why will he not eat except in that room, on that seat, with that particular plate, with foods not touching and not mixed up? Why are no 'bits' ever OK? Why does he only eat yoghurt, milk and white pasta? Why will he only eat chips and nothing else in a restaurant? Why does he only eat Kentucky Fried Chicken and nothing else ever - it's been four months now? And so on. I rarely ever meet a parent of an autistic child without fairly dramatic food likes and dislikes. The fact that many have difficulties holding cutlery and so are being spoon fed only makes their refusal to eat most foods all the more painfully noticeable.
There is no easy answer to this. Some children will eat more foods in a different setting particularly if they see other children eat them and school lunches can be a great help with widening their food tolerances. But for many the opposite is true - they would appear to far rather starve then try something new when it comes to food. Most children still look strangely healthy on the daftest of diets but it is worth having a chat with a dietician and checking on whether a supplement might be needed.
Try to introduce new foods, if not to be eaten for some days, weeks or months, then at least to be touched, sniffed and licked. Gradually the tolerance does tend to increase. But it is really really gradual. Mostly I would say food fussiness to an extreme degree is pretty much part and parcel of having an autistic child. The person who suffers most is the stressing parent, so make a decision not to let it stress you. It is what it is.
And last, because this is really the hard one at the end of the day….
My child doesn't sleep.
Some of our children really do only sleep 3 or 4 hours a day and this is utterly exhausting for a parent who has already chased them all day. You can do all the things you'd do for normally developing children - a fixed bedtime, a calming routine - bath, story time, bed, no excitement or games at this time, a clear message that getting up will not work etc etc. but it still has no effect - their system is in overdrive. Partly doing all the things above in the behaviour and communication sections will help by making them less anxious and hyper. Watch very carefully what they are eating and drinking - they can be hugely oversensitive to artificials colours, flavours and sweeteners. Cut processed foods out fo a while, remove all fizzy drinks and squashes and Ribenas. See if there is a difference. Make sure they have a lot of exercise in the daytime but not in the evening - swimming, running, trampolining, can all wear them out. If nothing works, make another appointment with your GP or with your doctor at the CDC and ask whether a medication such as melatonin might be appropriate. Being chronically short of sleep is very bad for your child's health and being short of sleep makes it impossible for you to parent well, so don't tolerate it year after year.
Well, that's it. You got to the end of the pack. Must be time for bed.
Bring your remaining problems to the parents group, to the NAS helplines, the CDC, the autism team, your SENCO, or to the internet. Keep searching for solutions. Love, enjoy and be endlessly fascinated by your amazing child.