No single approach or type of therapy has been found successful for all children with autism, but a variety of educational and management programmes and other therapies are available. Sometimes parents have found a particular approach has helped their children, but in summarising their experiences we are in no way recommending any type of treatment. We suggest parents look at Research Autism(see 'resources') which provides scientifically valid information about different interventions.
In addition to the standard therapies available through the NHS, for example, speech and occupational therapy which some parents had tried with some success, many parents had tried other therapies with their children which they funded themselves. There was no consensus between parents about what did and didn’t work and we recommend parents read the information sheets available at National Autistic Society for more detail about the different types of therapies discussed here.
Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
So what sort of things did they teach you on this course?
Oh yes. Sorry, that was what we were … It was basically an insight – sorry I do waffle. It was going into an insight on really how the autistic mind works and how they see the world around them and it has really made me realise as well how confusing that the world about them can be. It is like it takes them so much more time to digest information than it would a normal child and things that … surroundings around them as well, they need the time to get used to it, whereas if you walk into somebody’s house and sort of feel quite happy with where you are, but …. A good example was Joseph. I took him to a friend’s house. A girl at school had invited him round to play for the summer and it totally threw him, he was just totally not where he expected to be and it did take quite a while for him to settle down. Normally he is quite outgoing but he was just totally thrown by his surroundings and I thought I could remember being taught this on the course and I was just saying to him, “It is okay, you have a look round” and things. And I mean as it was we were only there half an hour and he insisted on going home and got quite upset, so we just left straight away. But I suppose being on the course made me realise that there was no point in forcing the issue and that he wasn’t going to settle. Maybe we could try it again may be for a fifteen minute visit or something and build it up gradually rather than just go into somebody’s house and expect him to be okay.
It also made me realise that they have got their own little ways of communicating when they don’t necessarily feel the need to speak and that the social interaction for them is quite hard as well and they are quite content on their own as long as they know they have got people around them, then they don’t necessarily have to be interacting with them that is something else. I don’t know it has just made me realise what life as an autism person can be like. And just little things. How – oh I am trying to think, trying to think how to put it into words actually, but it is just like little things like moving the furniture around at home can be something so small to somebody functioning normally but to an autistic person that can really be quite upsetting because it is not where it is supposed to be and things.
It taught us a lot as well about having the patience to really get to know your child as well. To get inside your child’s head and I think that really did help me there as well as it made me realise that I can talk to Joseph until he is blue in the face but unless I have got the eye contact there and I am cutting down the amount of words that I am using as well to speak to him. We cut it right back to the bare essentials. It is like if we were going out in the car somewhere and I wanted him to put his shoes and socks on I just used to … I started off by saying, “Joseph socks and shoes and then Mummy’s car” and he understood that if he put his socks and shoes on and you had to say socks and shoes otherwise he would put the shoes on first and then the socks on first because that was the way you told him to do it.
So it taught me as well to be … really to think through how I talk to the boys as well and that I do give them clear and precise instructions and if I tell them something the wrong way then they are going to do it the way that I tell them and then I can’t be angry at them for doing something the wrong way when they are just following the information that I have given them.So it is really interesting to know to cut down the language to the bare basics sort of a bit more about how they perceive the
A few of the parents discussed the Son-Rise programme which involves intensive sessions with volunteers within a purpose-built playroom in their home. While some parents felt that parts of the programme helped, overall it had not been practical to use it because it was hard to get enough volunteers to help run the programme. It was also difficult to set aside one room in the house for that purpose, and for parents with more than one child on the spectrum, it was also not practical as the children needed the playroom at separate times.
Kirsten lives with her three children aged 9, 7 and 4. Ethnic background/nationality: White Scottish
Since then we have looked into Son-Rise. We did a wee bit of Son-Rise for a few months. I have got a friend who has really stuck with Son-Rise for years and really believes in it. For us it was great, so optimistic, so positive but we didn’t really get the progress with Andrew. He stimmed more. We joined him and he stimmed, he just thought that was great fun and he stimmed more. So it didn’t really. In fact more of Andrew’s difficult behaviour from the past came back and it didn’t really work with the set up because this playroom is for all of them. Although it has got a lot of specialised equipment for Andrew it is for all of them and the girls are allowed to use it too and they are very much encouraged to play with him and go on the things, you know, go on the wee bound and the sling and all that to. So I think for Son-Rise we really would have needed a separate room and not have the distractions of too much else going on in here. I think that is the difficult part of it. My friend who has done Son-Rise they created a room, a basement room that is just for that, so there is no interruptions, no distractions. So we did six months of that and then I felt no it wasn’t and I went back more to this kind of thing. It may be partly depends on your personality type and your personality is real and it is sort of the family dynamics actually with what works.
Other therapies and approaches discussed included therapies designed around changing the child’s behaviour such as Applied Behavioural Analysis (ABA), Developmental Individual Relationship (DIR), and also those that aimed to improve communication skills such as social stories, Picture Exchange CommunicationSystem (PECS), Johansen’s Sound Therapy, Auditory Integration Therapy (AIT) and Relationship Development Interaction (RDI). One parent found PECS “brilliant to start off with” until her son developed his speech. A few parents also did more physical therapies such as using the trampoline, light sabres, squidgy toys and play dough to help strengthen their children’s muscles.
Kirsten lives with her three children aged 9, 7 and 4. Ethnic background/nationality: White Scottish
It is actually called the DIR model, Developmental Individual Relationship, better check what it’s called.
Because I should know Let me just summarise it; it is kind of a cross between the ABA and the Son-rise. It is going with your child’s interests when they are playing, going along with what they like to play at, what they are keen on and what is their motivated, I think they even call it the child’s sort of passion and enthusiasm, going with that but trying to use that to get interaction with yourself, to use exchanges back and forward, these things up here that is the kind of steps of the DIR thing.
So first of all you are looking for the child to share attention with you, then you are looking for engagement, two way communication, whether it is verbal communication or just looks, gestures, something back and forward. It is so that even, even if you are playing a game with a ball that – you are trying to get interaction rather than you just throwing the ball and the child walking off. You want the ball to come back and you can throw it back and you can throw it back so you are getting smiles, laughs, looks, back and forward exchanges. And then obviously once you get onto the problem solving that is if they can’t reach something or can’t do something, well how could you do it and could you ask for help and could you use such and such, that is sort of thinking and logical stuff. The creative use of ideas is kind of where we are getting stuck because that is the imaginative… and Andrew is not too keen on imagination.
But I got the DVDs from the States, Stanley Greenspan sort of working the…commenting on parents working with their child that has been fascinating to just picture what you are reading because you can read it and get an idea from it. but then to actually watch these kids and how their parents are doing it and Greenspan coming in and saying “Oh you could try such and such and how about asking them”… and just how the parents are getting a lot more interaction.
Fascinating how you can get so much more out, I suppose out of your child, less of the switch off, tune out thing and my own world and a lot more back and forward just by having, using the right questions not just asking something where the answer is yes or no, because that is all you will get. Where a typical child would go on to expand on what they are saying, if I asked Andrew, “Do you want to put this in the box?” He would say, “Yes,” or “No” and that would be it. We had to try and phrase it so it is “What do you want to do with this?” “Where do you want to put it?” “Why do you want to put it there?” “What will you do with it next?” Just to get more language. That is why we have got these questions up here to help us.
So I think that to me the floor time Greenspan approach is more positive and I have certainly seen a lot more progress in Andrew with that then I was with the Son-rise. But maybe it suits me more, because it is more structured. I can see more of a method in it, so what Greenspan would recommend is you try and build up to 20, and 30 minutes of this interaction. Constant back and forward exchanges and then have a break and do some sensory play and then they do semi structured activities, which is more the educational things, either with some language cards or a language board game or some maths. So you try and get 46 spells of sensory play in, four to six spells of semi structured play in and then the rest on this floor time because it is more kind of on the floor down on your knees playing with the kid at what they want to play at. So we are definitely getting places. He will pretend for a few minutes to be a lion or a tiger rather
Age at interview:
We startedtheir ABA programs quite late. Ideally you would want to start as soon as the child is diagnosable and these days that can be very young. My children probably could have been diagnosed around 12 to 15 months, and although it seems extreme to start one to one teaching of language and play skills at that age, in fact the best results come from the children who started very young.
The teaching is labour intensive, and their progress is the accumulation of many tiny steps. There is no pivotal skill that, once you teach it, everything else falls in place. We have to teach everything, with multiple examples, in multiple environments, with multiple people. It is very slow learning with my girls, but progress is steady. Once you know they can learn, you can’t stop teaching, even if the learning is very slow. Every little bit of language gives them a bit more of a life. You can’t have a life without language.
We started this teaching when my elder daughter was eight and my younger daughter had just turned 5. We had previously tried many different things, unsuccessfully, before we found the teaching approach we now use, Applied Behaviour Analysis, ABA for short.It is a curriculum and a teaching methodology that was developed by many researchers over decades and it’s been adapted to teach language and related skills to children and adults with all levels of autism.
The teaching ideally goes on seven days a week, every day of the year. Obviously we can’t manage that. We have teachers who come in for about 25 hours a week per child. We have receivedsome financial help from our local education authority to pay for this. Obtaining this funding was not easy. I try to do some teaching during the times that the teachers are not here. We have been doing the ABA programs for more than 10 years and we, as teachers, have learned a lot during that time. Most importantly, we’ve learned that you can’t teachwithout the child’s cooperation, without the child being happy to work with you, and learn from you. We work very hard to identify how to break down tasks into tiny steps, so the child can be successful on her own, without help, and then we gradually increase what she learns. The ABA programs have been the biggest help in my life with these girls, who are severely disabled and who will always be disabled. It makes all the difference to know that they can learn, albeit slowly, and that the language they learn gives them a bit better quality of life, and reduces the amount of care they will need in the future.
Before we started the ABA programs, we got advice from various professionals on how to teach our developmentally delayed children. Even the easiest tasks that they suggested were too difficult. We got check lists of things my daughter needed to learn to do, but no useful advice on how to teach her. When I asked, for example, how to teach colouring with a crayon, I would be told “Oh, you put the crayon in her hand and hold her hand, and you make her scribble.” If only it was so easy! My children strenuously resisted any attempts to involve them with early learning activities. We failed with a lot of things, and by the time we started ABA my children didn’t want to have anything to do with teaching or learning. With the ABA programmes, we started a long process of getting the girls comfortable with the tutors. Gradually they came to associate the tutors with enjoyable experiences and w
Clare, a pharmacist, and her husband have two sons aged 4 and 6. Ethnic background/nationality: White British.
We are currently doing a programmed called ‘Relationship Development Interaction’ or RDI. It is a fairly new intervention. We went over to Houston for some training last November and it evolves almost going back, taking your child back to the stage when somewhere in their development they started going off on this different path and it is almost getting them to try and get back on the path. It is like getting them to sort of think. One of the things with autistic children is you use a lot of prompts to help you and they can grow up and then become just totally prompt dependent so someone is there saying oh yes, you know, like we will go out, put your coat on or whatever, they are fine. If the prompts disappear then they are totally lost.
So we are working on that and we feel we have had some success with that in the short time we have been doing it. Joshua... certain task like putting the washing machine on, loading the tumble drier and that. He is really keen to help and it is helping his confidence and now we are at the stage where. I say right, you know, it is the purple washing liquid today so we will get that. He will hold the container. I will measure it out and we will put it in the washing machine. I tell him which programme we are having on. He will turn the dial, and it has really helping to build his confidence. So we feel it’s a very good programme. And we are working with him on that.
Age at interview:
Helen, a civil servant, and her husband have two sons aged 9 and 10.
Could you tell me a bit about the social stories?
Well basically what you do is, I mean there are various books and social stories which we looked at and you tend to use sort of matchstick type characters but you sort of draw a picture and then you have a simple phrase to describe what you are doing. It might be ‘I brush my teeth, you know, after I have had my breakfast’. It can be something like that. So that he can go through each sequence and know what he has got to do and how it fits in within his routine.
And one of the first ones that we had was for bedtime because he wouldn’t let me go downstairs unless he had asked me a particular series of questions and I was having to answer the questions forty times before I could go down stairs and the question was, “Will it thunder?” because he is terrified of thunder and he wouldn’t let me go downstairs until I had answered this question forty times. Or as you can imagine it took up an awful lot of time. It was taking two or three hours to get him to settle at night time. So we used a chart and we drew thunder and lightning and clouds and we sort of drew Joseph going off to sleep in his bed and we actually had, ‘Will it thunder?’ written down ten times. And we said to him we will allow you to ask this question ten times and if you do that you will then get a star each morning and then when you have got 20 or 25 stars then you can choose a present and we will go and buy it. And we did that and over a period of time that has worked. Now I have to answer eight questions before he goes to bed, one of which is will it thunder? But I only have to answer it once.
Age at interview:
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
Tom is, they are both hypersensitive...their nerve endings, you know, Tom can smack the top of his head and not feel it, but if you try and cut his hair which means pulling his hair back every nerve is like pins and needles going through his head. So if you brush his hair or cut his hair you are like causing pain as soon as you pull his hair back but if you smack him on the top of his head he won’t even notice you have done it.
They are overly sensitive to noise, to smell, to texture... everything … and to light, their eyesight as well. And everything is like much more intensified for them and much more painful and much more difficult to deal with. And so when there are loads of people around them, it is all noise and bustle and people jostling them and their clothes are uncomfortable, it just all adds to their fear and they are not able to cope very well with crowds, and so there are massage techniques you can use on their head and their bodies and using different kinds of massage brushes on them in the showers, I used on both of them in the showers to de-sensitise them on their hands and fingers, put my hands through their hair, and you gradually put massage brushes through their hair, just to kind of de-sensitise and by doing these massage techniques you gradually start to de-sensitise physically their physical sensations.
I don’t know what you do about noise. I think, you can’t, I think they still don’t like loud noise and they still don’t like sunlight we just have to buy them a hat. But when it comes to clothes you can do that through massage which is what we did. So Tom can now have his hair cut. Matthew can’t yet, but Tom can have his hair cut without too much pain but again the clothes have to be comfortable that is where you have to buy them soft, no zips as we say, soft clothes and no hard waistbands or anything like that.
Other approaches discussed included systematic family therapy [a form of therapy that emphasisesfamily relationships as an important factor in psychological health], cognitive behavioural therapy, neurological testing, physiotherapy type approaches such as Bow Bath Therapy, cranio-osteopathy, reiki, aromatherapy, reflexology and crystal healing. Some parents who had experimented with different approaches described using some aspects of the approaches in their daily lives.
Paula, a specialist senior nurse practitioner and teacher, is married and has two sons aged 14 and 12. Ethnic background/nationality: White British.
So yes, then we went to CFCS and we talked about David’s anger, because you know he can’t keep that under control. He gets frustrated and socially he is very, very immature. You know he really does do the Kevin and Perry thing. You know if he can’t get his own way, “Oh oh.” He just stops. He does his piano practice, “mm, mm, mm, mm”. And everything is very, you know, it is in Technicolor with this kid. There are no watercolours and black and white. It is bang, it is in, you know. So anyway we had this systemic family therapy which he loved because it was all being recorded and so he used to sort of, “Yes, mm, and my mum is horrible to meee…” And so you would get all this sort of shit that was going on, all the time bless him.
Age at interview:
Katrina, a full time carer, and her partner have a daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
Yes, well Callum has had quite a lot of different therapy. Going back sort of right to square one he initially had speech therapy because he had no speech and then he wasn’t using speech properly. He had occupational therapy because of his sensory problems to get him used to touching things like water, which he just could not tolerate touching. The most recent therapy he is having is the CBT – the cognitive behaviour therapy - which is to help him with his irrational fears and his phobias, which as I say was the weather, blood, anything that would be like a world disaster or an extreme weather condition, a road crash, anything that he might be injured in, the beach, seaside, flooding, Callum could go for a walk for ten metres and think of ten different things that might happen to us even as extreme as a meteorite landing on us.
That is the sort of thing he came out with. There might be a tornado, an earthquake, so actually when we did have thunder storms it was a real, real problem and not just when there was a thunderstorm, but leading up to it. If there was talk of it on the news, if it even looked rainy… and then it got to the point where he was just obsessed with the clouds and worrying that they looked like rain clouds so it was just a huge part of our life. And, as I said, Callum didn’t want to leave the house you know and this was all while he was at school, but it was happening when he was out of school as well.
It didn’t matter, he was just so consumed with fears and anxiety and those were just the ones he could tell me about you know. There is still another million other things that he thinks of and he is quite a way through his therapy now, so, he has been going weekly, but he is much, much, much, much better. I mean on a day like today he wouldn’t even have considered going out, because the sky is not blue, it is grey and that would mean, you known, blah, blah, blah, but he is coping remarkably well now. But he still does have fears and I think my understanding of Asperger's is that that will be lifelong and I am on quite a few email groups and it is not uncommon. I thought I must be the only parent in the world who had a child like Callum that worried about this that and the other but it is not uncommon for children to be worried about storms and natural disasters but equally they can be frightened of buttons and balloons and I do accept that even though we might be over the thunderstorms one there is probably another anxiety just around the corner, or an irrational fear because I think it is the nature of their condition.
One parent described her approach as “a mixture of very sensitive teachers with very good strategies in the schools, some alternative therapists who were very carefully chosen and whose advice we followed and a very, very calm atmosphere in the house”. Other parents reflected on the difficulty of knowing what approach to take and one offered the following advice:
“One of the things with autism you know there is so many interventions and it is very easy to almost beat yourself on the head because you think you know are we doing enough. You know you always worry that you are not doing enough for him or you are not doing the right thing. At the end of the day as a parent I think you have just got to do what you feel is right for your child.”
Reservations about therapies
Some parents had tried various approaches and had reservations about the number and cost of different therapies on offer. Some of the therapies mentioned above can cost a lot of money and involve travelling abroad for introductory training programmes. One parent said: “I have tried all sorts of weird and wonderful things out of desperation”; another said: “Grasping at any kind of hope, any kind of alternative treatment, any kind of magic bullet, can waste enormous amounts of time, energy and your child’s goodwill”. Another parent reflected on the “load of mumbo jumbo” they were desperate enough to try when their son was younger.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
What sort of therapies did you try when you were trying all those different things?
We have had some unfortunate experiences with magnets. After I had – we did the documentary. The documentary went out about five years ago and I had an awful lot… I got 12,000 emails within two hours after the documentary went out which obviously I couldn’t answer them all and I still get bizarre things even now I get letters to the lady in the white bungalow in [town] with autistic children and they come to my house. It really is strange. But there are some very unscrupulous people who contacted me as well that said “Oh I have seen you on the television and we have got something that could help”. And what they did then was say well we will bring round, in this particular instance, was we will bring round magnets and mattresses that the children can lie on and it calms them down and helps them to sleep. And then of course I had said, “Don’t leave things with Joe.” Joe is Mr Picky, everything he gets he has to poke holes in. So of course he was left lying on a mattress with lots of little magnets in, only to wake up in the morning and there was a pile of magnets and a lot of holes in the mattress. He spent the whole night take them out and lining them up [laughs]. But then they charged me £3,000 for that. And when I told them please don’t leave it. And they never let up, you know, I ended up paying £3,500 because they were knocking on the door and all sorts of things. I had somebody send me a dead broiler, a dead chicken, through with feet on through the post in a box and said that if I boil this chicken for two hours and make the children drink the grease that will get rid of them. These are things that other people tend to think of.
But for me personally, I did something called a listening programme. There is something called ‘Auditory Integration Therapy’ which actually now I work with a charity, volunteer with a charity called Research Autism and even though I have been asked to do work with charities and be the face of whatever, I always tend to just keep out of it, because this is my real life clearing up stuff after these lot and dealing with them. But this charity, they focus on doing research into which interventions work and which interventions can be validated to as much as they can and so many parents get stuck with so much heartache and so much financial cost and personal cost because people promote whatever to cure autism, to change autism and in reality you know a lot of these things are just money schemes from other people and you are desperate.
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