Behavioural problems.

Autism presents behavioural challenges in many forms which are the most significant factor for any parent raising an autistic child. This page offers one thing, a perspective. This whole web site is about a parent's perspective on autism and is not written by experts or professionals working in the field of autism. What you will get from this page is our opinion and a few pointers to what we have tried over the years including where we have had success and where we have clearly got it wrong and made mistakes. Hopefully some of the mistakes may provide points for consideration for other parents in the future.

Please see the bottom of this page for information about dealing with more significant challenging or problem behaviours.

As we have been writing this page for many years, there are updates and we have decided to leave those in as they do provide some insight into how we have helped our child over the years. Please do bear in mind that what works for one child may be entirely inappropriate for another which is why it is important to seek help and support from support groups and health care professionals.

Background reading for this page came from "It can get better" published by the National Autistic Society 1998. This book suggests strategy, having a plan and taking that plan stage by stage. Unfortunately, to do justice to such (sound) advice does call for a certain amount of self discipline and good personal organisation skills.

There is one certainty that few could disagree with, that some kind of direction is required, and agreed by all parties involved with the care and supervision of the autistic child. Once such a plan has been agreed , consistency is essential. We believe that every child, not just autistic children, need to know where they stand with their parents and / or guardians. In situations where parents have differing opinions regarding what constitutes acceptable behaviour, the child does not have a chance and will inevitably find themselves resenting someone involved with their care.

However you approach the issues of behaviour, it is worth remembering this quote by Jacqui Jackson " Remember that you're the professional. You're the one that knows your child best. Just do your best - that's all any of us can do as a parent or individual." (BBC Ouch! link here)

Anger management, temper tantrums.

We believe that we should, wherever possible, avoid treating our daughter any differently that her two older brothers. In diet for example, if our daughter does not eat her dinner, she will not get any desert. There are parents who will disagree with this strategy, but this goes back to consistency, security and self confidence. Our daughter soon learnt why she was missing out and although we do still have dietary problems, (lack of appetite) we no longer have any tantrums at the table, and our daughter eats with the same dexterity and tidiness as her older brothers. Despite this, Zoe does still need occasional help with cutting food and encouragement with certain meals.

The difficulty, for us at least, is in identifying the reason for the tantrums, our daughter will often start screaming for no apparent reason and will be totally inconsolable for some time following. The key here is to get inside the child's head, to understand the frustration and to help and console the child. Many perceive the temper tantrum as attention seeking, this may well be so, as it is difficult to sit down and give quality time to a child who will not respond.

Update - Feb 2003 - We have identified certain visual stimulants that do help to reduce our child's levels anxiety and distress:

Light.
This is the big one, we have a large disco projector in the lounge (featured on our Toys page), which projects colours around the walls, floor and ceiling. Are we mad? Probably, but it works, and whilst we have grown to ignore the lights, we have also grown to enjoy the peace and quiet from a soothed and comforted autistic child. Zoe also has other, smaller light toys, such as a water filled tube with plastic fish.

Sound.
Zoe will expect us to repeat whatever she is saying, apparently this is very common with autistic children, we do try to limit this as we are conscious of the allowances that we have already made. There are other children in the house, and we must avoid circumstances where resentment may arise. If we are constantly giving all of our attention to Zoe, the boys will resent her, and so far, we have managed to keep a fairly healthy balance. Zoe also has an organ which she bashes some notes out on sometimes. Our's is a slightly noisy house.

Update - Feb 2005 - Our earlier approaches are less effective now that Zoe is getting older. We are in the process of extending our property to allow for a separate room for Zoe, where she can have her familiar things around her, including her computer which plays Norah Jones music videos at two volumes, deafening or silent.

Update - June 2005 - Zoe's playroom is now almost complete. Zoe is able to have all of her familiar things around her and is much more relaxed as a result. Zoe has extended her musical choices to Goldfrapp 'Black Cherry' (the video for this is visually interesting and this may be why Zoe plays it so often), Daniel Beddingfield, Avril Lavigne, Joss Stone and thanks to the school, Elaine Page ('Memories', which is played over and over again at full volume, frankly we would like to forget that particular song !!).

Update - October 2006 - We got it very, very wrong with the playroom.
Zoe is stressed and highly vocal - She has developed even more repetitive behavioural patterns which come and go (they do pass - even the worst and most embarrassing ones as long as we don't feed them by rewarding the behaviour either positively or negatively). Something needs to give as we have spent a fortune extending our house and our daughter is worse than ever. From the picture here it is clear that the room was over stimulating Zoe (who said autistic children are tidy?).

Update - January 2007

Firstly a quick line to explain what I have written below, this is what we have found to work for us. This is not meant to be read as a guide to what you should be doing with your children. Every child is different and needs to be approached in a different way, with different strategies and methods to manage behaviour.

An update is well overdue for this page. - Our little girl has changed, she is growing up and we can now see many differences in her behaviour. Over the last year we have removed Zoe's computer from her playroom as it was over stimulating her and causing her considerable distress. Once this was resolved she has calmed down a great deal. Then Zoe's CD player broke and we decided against replacing it. (see updates below)

We have continued this trend of a gradual reduction in the stimuli within her playroom to a point where we are now implementing a small living area for our child, with nothing more than a TV and a video and DVD player. The video and DVD player will be behind glass to prevent Zoe from repeatedly getting the same section of video to play repeatedly which heightens her obsessive behaviour and as such, her stress levels.

Basically, we got it wrong - It happens. The lights are all coming out as they don't work these days and the playroom is being converted to something which is the complete opposite of what we set out to achieve. We believe very strongly that it is essential for us to adapt and to seek out new ways of meeting our daughter's needs, introducing changes gradually and gently.

Moving away from the house, behaviour is still a concern. Zoe is well behaved 99% of the time and we know that we are very lucky indeed. For many, life with an autistic child is very difficult indeed. OK so how do we manage? Well, what we do works for us, but may not work for someone else. Here are just some of the things that we do on a regular basis:

• Be aware of our daughter's 'trigger' words.
  Zoe is sensitive and hates being in trouble. if she thinks she is in trouble she will cry for hours and sometimes be miserable for days. We never use the word "No!" We will find alternative words to achieve the same goal - for example - No you cannot have a biscuit ! would be replaced with "Have 2 biscuits at supper time" (not to indicate more if she waits, Zoe always has two biscuits at supper time and even if she asks more than once, she will still get the same answer) or "No! don't put your fingers in there ! " might be replaced with "Zoe, you don't want to put your fingers in there, it might hurt you" . Now, you might consider this approach to be weak or undisciplined but we have a calm and relaxed little girl who is aware of the dangers around the house and outside and who is absolutely obedient without question. A little sensitivity and we have reaped huge rewards.
• Keep to a routine - rigidly.
  We maintain Zoe's 'ways' for want of a better word. Zoe likes to have her blanket round her when she goes to bed, she likes to put her tiny dolls to bed (a real development in symbolic play) and she has other routines which we accommodate. Zoe has a schedule and structure so that we don't spring things on her. Some things can get in the way, such as visitors canceling at the 11th hour, but the worst problem comes when people promise to come and we warn Zoe only for them to let us down, resulting in a very upset little girl.
• Don't force her to do something she clearly doesn't want to do.
  Zoe does have to do her reading, despite her protests but we are patient and supportive and we usually get there. The same applies to her spellings, where Zoe is very good at spelling, she just doesn't have a clue about what she is spelling out or how the words are structured and formed together.
• Give her space - Zoe likes to watch her cbeebies and she gains so much from this that we do actively encourage her to relax in this way, though not for too long.

Update - February 2007 - Zoe's playroom has been drastically reduced in size, by adding a large dining table and changing the emphasis of the room from a large rectangular open space to a small cozy area at one end where our child can sit quietly watching her favourite programs on her TV. At present Zoe loves Charlie and Lola and has to have the same stories read to her at night, this is progress as Zoe is learning speech and language techniques as she is learning when it is appropriate to use certain phrases and how to use them in context.

Zoe's behaviour is now much calmer, she is visibly more relaxed and certainly more confident now. The lights which I spent weeks putting together with safety switches and hiding all plugs away have all been removed. Zoe is now relaxed and a pleasure to be with. So we have learnt a great deal folks, although our daughter absolutely loved the stimulation within the 'Snoozle Room' at the hospital with its coloured lights, fibre optics and such like, she did not benefit from the same things at home, it was over stimulation. We were probably over optimistic that we could re-create something that the hospital had developed on the back of considerable research and expert opinion, not to mention their abilities with regards to funding!. Of course Zoe is older now, she is nine years old and her needs have also changed.

In terms of Zoe's beloved computer, she still has access but it is very limited and with one to one support from us or her brothers to help curb the frustrations of trying to use a computer which has far too many distractions.

Update - May 2008 - Many things have changed, Zoe has changed schools (see our schools page) and she is of course another year older. Many people who know Zoe have commented on her progress and we have taken great comfort from this as we are often too close to see the smaller more subtle differences.

TV - VCR - DVD - CD - PC - All technologies easily mastered by a child who manages to archive the same goal irrespective of the equipment in question. Our little darling likes to play the same 2-3 second segment of a video, dvd , cd or tape over and over again. Failing this we are subjected to endless renditions from the likes of Amy MacDonald or whoever she is currently enjoying. We have an intricate knowledge of a BBC production "Come Outside" on YouTube - the flavour this month is poo, we like to play this particular video over and over again!

Zoe has mastered the glass doors on the TV and we have been powerless to stop her ever more ingenious mind locating remote controls and achieving the same goals. In the end we decided that the best thing we could do was to remove the television and dvd from her room - all that Zoe now has is a childs cd player and her bubble tube. When we have another flash of inspiration to take us one step ahead of Zoe we will re-evaluate our plans.

There is a cost to this as our little darling now commandeers the TV in the lounge and regularly changes the TV to black and white with very odd settings o the contrast and brightness - none of which we can replicate, even though Zoe effects these changes in 2 seconds flat. Our TV remote control now lives in the kitchen above a wall cupboard - not so handy for changing settings but we have legs and we do use them.

We are now experiencing some temper tantrums - particularly at school and on the bus to and from school. We do have our suspicions that our little girl is being dragged kicking and screaming into our world. Please see our schools page to read further on this problem.

When behaviour becomes a bigger and more serious problem.

We have been asked to provide some information regarding behavioural management for more challenging children and adults with autism and we have been given details of a company which provides help and support for people dealing with individuals.

Studio III is a group which specialises in working with adults and young people with challenging or problem behaviours and staff teams and carers who work with these groups. Specifically Studio III Training provides staff training in the management of challenging behaviours across a wide range of areas from mainstream schools to secure mental health settings. Studio III Innovations produces distance learning packages for staff teams and undertakes leading edge academic research into challenging behaviour. Studio III Clinical Services works directly with young people and adults who have challenging behaviours. Although we do not widely publicise our work we are probably the largest organisation of our kind in the UK.

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