Autism is a serious developmental, life-long disorder which has no known cause or cure. It affects a child’s ability to learn and communicate. It can also lead to severe behavioural problems.
It’s thought boys are perhaps three times more likely to be autistic than girls. Nobody is certain why that should be. Our paediatrician has counted the number of children severe enough to be brought to her attention. It is one male child in every 69, and one child in every 139 if you add in the girls.
For unknown reasons, more and more children are being diagnosed on the autistic 'landscape'. Possibly better diagnostic procedures add to these numbers, but they cannot account for all of the children. This same increase in numbers has been seen around the world.
The best guess seems to be that there is often a genetic predisposition, and then there are environmental factors that 'trigger' autism in those who are susceptible. We do not yet know what these are, although the blame has been placed with mercury, lead, vaccinations, pollution and various other substances.
Living with autism is not easy. I have two children and a husband with autism of different kinds. There have been times when I wished I had a ‘normal’ life. However, there are ways of managing the condition and making life easier for the whole family. I hope you find this article useful.
I run a telephone helpline and have spoken to hundreds of parents about autism – some wonder if their child has it and some have a child who has recently been diagnosed with the disorder. I myself am married to a man with Asperger’s Syndrome and I have two children who are also on the autistic ‘landscape’.
When my son was nine months old, he was just beginning to walk and had several understandable words - Mummy, Daddy, his sister's name, 'Lady' (the name of our cat), as well as 'cat' and 'meow'. But some time after his first birthday we became concerned that all was not well. Gradually he lost all the words he had, and became anxious, often tearful. We worried that he was losing his hearing and that he was regressing to babyhood.
I took him to the 18-month check-up to ask if he was deaf. The nurse gave him a standard 'hearing test' (she stood behind him ringing bells and shaking a rattle) which he passed. He was my second child, and I was told that “you cannot compare children” and that “boys are often slower to talk than girls” and even that “Einstein didn't talk until he was four”. It may all have been true, but it was not any comfort.
Later we found that he did, in fact, have quite severe 'glue ear'. The fact that he'd turned round to see where the nurse was, at more or less the right time, had probably been coincidental rather than because he’d heard her. He went on to pass three more hearing tests before he was finally allowed to go to a specialist clinic – where they bounced sound waves off his ear drums and proved that he had virtually no hearing!
This complicated everything. The fact that he 'could hear' had allowed doctors to say that there was just a 'delay' in his speech and no reason to worry. The fact that he then 'could not hear' allowed them to say that this speech 'delay' had to be expected, and there was still no reason to worry. Needless to say, we worried. Many children with autism do seem to have endless bouts of hearing infections/antibiotics. Nobody is quite sure if or how these two things are connected.
Over the months his behavioural problems increased. He was now biting me, his sister and anyone who stood in his way - often drawing blood when he did so. He had also discovered that kicking my shins caused me an awful lot of pain. So if I tried to carry him off, a heavy kick would all but disable me. The only reason he was still able to attend a mother and toddler group was because I ran the group!
I know other children with autism who self-harm, most commonly by biting themselves. In both cases - harming others and harming themselves - the reason probably is that the child has no control over their environment. When the child lashes out at others, they try to exert control. When they self-harm it seems to bring a relief similar to an opiate pain killer. The only way to cope with either one is by constant monitoring, distraction (if the child appears to become upset) and, if necessary, removal from the situation that is giving rise to the problem.
His inability to make himself understood frustrated him terribly (hence much of the biting and kicking). We did come up with some strategies that helped – e.g. he could sing the theme tune of the video he wanted even if he couldn't ask for it by name; he did not point (often a problem for children with autism) so would instead lead me to his drinking beaker or the fridge and place my hand on what he wanted.
Some children with autism, including mine, do not need to sleep very much. Neither child has ever needed a day-time nap - and even now (aged 11 and 9), they need just four or five hours of sleep in any 24-hour period.
When my son was little I had to be constantly vigilant whenever he was awake. He was able to climb out of his cot and over any stair gates, and would go around the house to see what would happen if you turned the taps full on and put the plug in, what fun it was to remove and hide every item from the fridge and freezer, what scissors could do. I learnt to wake at the slightest sound.
We tried Melatonin which made him sleep earlier, but not longer. Other families we know have had more success. The only thing that helped me through these awful times was that I did not blame my child - it was the situations he found himself in, rather than him being deliberately 'naughty'. That alone kept me sane.
I will not pretend that there haven't been hours, days or (sometimes) weeks at a time when I've wished I had a 'normal' life. But I am surviving and thriving.
There are days when everything is unexpectedly and utterly delightful, days when my family's unusual outlook on life shows me just what is important - and what is not. Their autism sometimes brings out the worst in people, but can also bring out the very best. I have made friends with people I would never otherwise have met, and seen miracles.
You may be newer to this than I am, but - trust me - you are the best thing that ever happened to your child, and vice versa.
If you are wondering if your own child has autism, make an appointment with your doctor and explain your concerns. Write down everything that has been troubling you and take the list with you so you don't miss anything out. Take along your partner or a good friend, too, for support.
Many areas of the UK now have specific medical tests that can be used from about the age of 18 months - and these will either set your mind at rest or get you further tests.
Getting help and advice
Find out if there is a local support group. If there isn't one, then consider starting one of your own. There are other people out there, coping with autism. And you will be able to learn from each other people’s experiences.
The local Citizens Advice Bureau or 'Help Shop' should know about groups near you. So should your health Visitor and Social Services. The National Autistic Society may be active in your area. The NAS run a wonderful 'Early Bird' scheme to help parents cope with autism - ask if this is available in your area. If there is nothing locally, then there are autism chat groups for support available on the internet.
And you are important. Believe that! But often you will have put yourself at the bottom of your own list, coming way below the need to find services and support for your child. Autism can split families. Make some time for yourself (even a warm scented bath can be a respite) and for your partner and other children (if you have them).
Help can be found from Home Start if you have one or more children under 5, and from carers charities, although what is on offer differs from area to area. There are also befriending groups such as Face to Face, and counselling services. Ask Social Services, too, what help they can provide - many wonderful schemes will only be available to you if you are 'sponsored' through Social Services.
There is no 'cure' for autism, but there are several ways of 'managing' it. The best way is to start working on it as early as possible. Some health/local education authorities are more geared up to this than others.
Ask about special nurseries in your area, and units attached to schools. Include private nurseries in your search - the authorities may be persuaded to pay if they have no other suitable state provision. And apply for Disability Living Allowance/Carers Allowance so that you have money to pay for essential therapies if all else fails.
There are several types of programme for autism - those that try to re-pattern behaviour (e.g. ABA), those where you get 'alongside' your child in his world and try to entice him into yours (e.g. SONRISE), those where you tackle elements of everyday life (e.g.TEACCH), some where you address sensitivity of vision or hearing, others where you try to 'rebalance' the child (e.g. cranial osteopathy), some where you try to 'mature' the child's responses/reflexes (e.g. brushing and aromatherapy massage) and some where you address your child's diet (usually by cutting out all gluten and all milk products).
The medical and/or teaching professions regard some schemes as unproven and unworkable, and many of them cost thousands of pounds. You are unlikely to get funding for these, although a few education authorities will fund behavioural therapies if they cannot offer a better placement for your child, and some independent schools and nurseries (mainly working on ABA principles) are now being set up.
Other therapies and interventions, such as speech and language therapy, occupational therapy, portage, musical therapy, are available from your health or education authorities. Other help may be available through charities such as Riding for the Disabled. But be warned - waiting lists can be very long. Apply now!
You alone will be able to decide which of these, if any, is suitable. Get as many opinions as you can, then make up your own mind. You alone are the expert on your child, and you alone will know whether the fight for the more expensive therapies is worth it in terms of your peace of mind/level of exhaustion/welfare of your family as a whole.
Communicating with your child
Some children like to use Makaton or another sign language, or to communicate with PECS (Picture Exchange Communication System) or another picture system. Research shows that using two or even three systems together will help speech rather than hinder it. Do not be afraid to try it out.
And don't be afraid to try out your own simple picture system. Take photos of your child and the other people and animals in his family, his room, beaker, plate, cutlery, favourite foods, local shops, car or bus, toys, etc - and whenever the item in question comes up, show him the picture, carefully say the word and see if he will copy the word. (You can add the names in sign language or letters underneath.)
Get him to choose the picture showing what he wants and use it to ask you for the item by handing it to you. When he hands you the picture, you hand him what he has 'asked for'.
Start with only one or two things at first (food or toys, perhaps) and gradually increase the number as he gets used to the idea. Build up to planning his day in pictures, putting them in order in a photo album or on the wall (with a strip of Velcro) so that he knows what will happen, and in which order. Give him some feeling of control over his life.
Food can be a problem. Your child may be extremely sensitive to smell, taste or texture - or all three! And some children are even sensitive to shape. I know one child that will only eat cylindrical food.
Do not try to mix foods on his plate - he may even prefer separate plates for each sort of food, e.g. sausages on one plate, beans on another and chips on a third. He may also have a very limited number of foods that he will tolerate. Try offering other foods from time to time, first by putting them on a side plate and then by offering him some to smell on a spoon or fork.
Praise him if he will tolerate this and especially if he will allow the food to touch his lips. Do not expect him to swallow it until you have tried this on several occasions. And do not attempt new foods if there is something else important happening (starting nursery, new baby, potty training, etc).
Adapting your home
Children with autism often show no fear or sense of danger. To get hold of a toy they will snatch it from a snarling dog, clamber up to a top shelf, jump from a great height, run across a busy road. Make sure that every power point is covered, every fire is protected by a guard, every room where there might be danger is kept locked.
We put a hook and eye at the top of every door so that at least one room at a time could be kept tidy and the contents kept safe. Then we made sure there was nothing to climb on to reach the hooks. Other families carry around bunches of keys at all times. Every door and window has at least one lock. All edges on tables are curved.
We only knew our son could open the front door (two separate locks) when he went missing and we discovered he'd opened the door and then crossed a busy main road. We only knew he could escape from his car safety harness when he stood up on the back seat then tried to climb into the front to join me.
Assume your child might be tempted to try things that other children would not try. Mouthwash - which can be mainly alcohol - is too tempting in its bright colours to be kept inside a house (anywhere!) and childproof caps are, sadly, no deterrent to a determined child. Keep all medicines hidden away and out of reach in a locked cupboard.