(February 6, 2000)
Background
This is a huge subject, and one that it is almost impossible to chart in detail. I (Evie’s mum) basically wrote it to encourage other parents who have children who are not echolalic, or who have very little language, or who in fact present as mute. It is always difficult to predict which children will speak and which will not, not to mention whether the speech is meaningful when it does emerge. The only thing I can say, is that I, as Evie’s mother, was just determined that she was going to speak! It took a fantastic amount of hard work from our tutors, our Lovaas consultants, and ourselves, not to mention the supreme effort that our severely handicapped little girl made. Without the intensive one-to-one specialised teaching available through the Lovaas programme, we are utterly convinced that Evie would not have learnt how to talk.
However, we are also very aware of many friends’ children who sadly have not learnt how to speak, and we want to write this piece in humility, and as a way of encouraging other parents to try to help their children to achieve as much as they can. The communication board that we describe is a bit like the types of tools used on the specialised Lovaas Reading and Writing programme.
Firstly, let us describe Evie at the start of the Lovaas programme in terms of communication. Her attention was appalling, she would not sit at the table on demand, and she was very non-compliant. She had uttered words (single) during the early months of her life, but at 3 ¾, when we started the Lovaas programme, she was effectively mute. She could not point, she could not gesture, she could not understand anything that was said to her in a purely auditory way, although she understood things through context, e.g. we would grab her shoes and say, "OK, time for a walk!" She used to "tool" our hands to obtain something, that is, she would grab our hand and throw it towards the food or item she wanted. She had poor eye contact and she could not share attention. She could not respond to a point request. She basically was silent except when she screamed, and we usually had to guess what it was she wanted.
At the Start of the Lovaas Programme
At the first workshop, she was able to say nearly 4 labels, e.g. "Gu" for "Pingu", "da" for spider, and a few others. We worked on this programme (Expressive Object Labels) extensively over the next few months, gradually increasing the number of things she could label. This was nouns only, usually everyday items or favourite toys, and did not include people or verbs etc.
In parallel, we ran a Receptive Labels programme, to ensure she understood the label when asked, e.g. that she could point to a "video" rather than a "dog". She had to be prompted hand-on-hand to do the pointing, and it took several trials for her to learn a label. Because Evie’s expressive language was so much behind her receptive, we had to run many drills in purely receptive form, and then re-visit these later when the language came in.
We also ran the Verbal Imitation (VI) programme. At first our Lovaas supervisor did not allow us to say "no" if she could not make the sound. We simply said, "good try" even if she remained silent, and just asked her again to copy, or tried to teach a different sound. Our tutors got up to many antics to reinforce her, including throwing her up in the air, and even pretending to help her walk upside-down on the ceiling! (This was when she was only 3 or 4 years old, and not very heavy!)
I think one of the reasons Evie ultimately started to speak, and this is only my view, but it was that we did not really stick to the "Lovaas structure" in terms of what sound to teach when. Our supervisor was very keen to have her copy whatever sounds she would make. So if she made the smallest babble or anything resembling a sound (and some of her sounds were a bit like a baby animal, rather than a human baby, as she could not really babble), then we would ask her to say that sound. Then we would reinforce her massively whenever she said anything that remotely resembled that sound. We would reinforce at this point of the programme with chocolate (a "primary" reinforcer), as praise was not that reinforcing to her, or was certainly not reinforcing enough to have her work for it alone. Gradually, after teaching sounds we taught syllables, then words, then phrases and then sentences. The VI programme was just copying – other Lovaas programmes taught Evie to attach meaning to the utterance.
But in addition to this preliminary VI, our Lovaas supervisor asked us to babble back anything that she said, during any drill and also out of therapy. This seemed very odd, but we did it almost because we despaired of getting any sounds out of her, apart from her "Gu" and "da" type labels. The best time for this copying I found was when Evie was having her bath, as she was relaxed and happy then, playing with bubbles. I would faithfully copy back the sounds she made. It was as though we were trying to convince her that any noise she made was better than her silence!
This went on for some time. We started on VI with sounds, and the drill was performed with Evie, who was then 3 years old, sitting in her little toddler’s chair, and with the tutor bang smack up opposite her face, kneeling on the floor. We did NOT use a "Look at me" SD (command) at this time, unlike many Lovaas programmes, and I think in retrospect, that was also a very good thing for Evie, as she found it extremely distressing. It was really more like doing facial NVI (Non-verbal Imitation) than proper VI at first, we would mouth a sound in an exaggerated way, and wait for her to copy. Many times she would just sit there silently, as though puzzled as to what was required, or sometimes she would cry because she couldn’t do it. We never gave a harsh response even if she couldn’t do the command, but we reinforced wildly whenever she made an attempt.
Very, very gradually, we shaped the sounds, that is, we increased our expectation of the sound we required. Many sounds took months if not years to teach. Her articulation was very poor, and even when she did start to copy, no-one other than the tutors could really understand what she said. We also did not demand eye contact on delivery, which some Lovaas programmes do, and I feel this helped her a lot too.
One Year Later
Then about a year later, we had our Consultant come over from Norway. At this stage we were doing some VI in the programme, but not that much. The Consultant said calmly that he thought Evie could do better, and we started to give her a "no" when she could not do the sound. Evie did not like this, but it did make her try a lot harder. Incredibly, the consultant said we had to increase the frequency of the VI drills to every other drill. This seemed like, and was, a fantastic amount of VI. It is, in my opinion, just about the most difficult drill to perform, and inexperienced tutors can do a lot of damage if they carry it out incorrectly. Our Consultant spent a lot of time training the team, and we had to perform a lot of overlap (two tutors or more working together). We also had very frequent team meetings, until we all were confident that we were teaching, prompting and reinforcing Evie all in the correct and identical way. This was very stressful for the tutors, but very quickly, Evie did not seem to find it as stressful as we did! And gradually, her performance improved.
After nearly one year, we wanted to teach Evie to request something. The obvious choice was food, especially chocolate, as this was very reinforcing for Evie. Our Supervisor designed a simple Communications Board. By this time Evie had learnt to read simple word-cards using look-and-say reading. She could not say a word as long as "chocolate", so our Supervisor wrote the word "choccy" down on the card, and Evie was just able to say, "cho---kee" in a sort of strange chopped kind of way. We had a few dummy word-cards on the Communications board too. Evie was taught to select the "choccy" card, and bring it to a tutor. The second she handed the card to us, we would praise like mad, and immediately she would be given a small piece of chocolate. She was made to work for every little piece of chocolate in this way. Gradually we increased the options to other foods, and then toys, and then videos, and then places to visit.
That Christmas, I was determined to teach her how to say a sentence. We wanted to teach "I want". But a big problem was the /w/ sound, so using a combination of "watch my mouth" (much more effective and less stressful than "look at me", and also a mirror, I managed to teach her /w/, then "waaa", then later "waaaant". This meant that now, using the word-cards as a visual support, she could make the sentence and say, "I want cho-ccy, "I want water", I want spider video", etc. She had some 20 sentences that were fairly rotely taught in this fashion, but, very excitingly, she also started to generalise her own phrases, e.g. she said, "I want to go in garden" all on her own, and not just once but several times, and meaningfully too.
Wider Professional Input
Just after this, we started to work with a private speech therapist. She worked with us within the boundaries of the Lovaas programme. She felt that Evie had missed out on stages of her communication development, especially babbling, which Evie had not done. So, we used the VI drills to teach our little 5-year-old daughter to babble like a baby! I remember teaching, "say da-da-da", "say ma-ma-ma" etc, and the phrases were all carefully chosen and structured by our speech therapist. A couple of months later, I commented to her that Evie was now saying these babble-sounds spontaneously as she lay in bed at night before sleeping, and she said that in that case our goal was complete, so we could move on to the next stage.
In addition, in conjunction with our private speech therapist, we worked on addressing the vowels and dipthongs in Evie’s speech, as this can affect intelligibility to a great degree. We worked on SDs (commands) like, "say it long", "say it short".
Similarly, we worked on getting Evie to speak louder and to self-monitor volume, so we worked on "say it LOUD!" and "say it quietly". The point about these commands was firstly to teach her to hear the difference, secondly to be able to say the phrase or word differently, and thirdly to do it under SD control.
We also worked on "say it high" and "say it low" to get her aware of her voice range. The great thing about all these SDs is that you can make them great fun, and can over-model them to make the child hear the difference, and hype it up to make them laugh.
One technique that the speech therapist recommended was Repetitive Paraphrasing. This was not something that fitted into the Lovaas approach. The team all felt that the amount of language was too much for Evie to take in, but we did make an honest attempt at it. In the end, Evie showed us very clearly that she was not prepared to put up with this, and she would come up to us and place her hand over our mouths as we did it! I would be very interested to hear whether other parents or professionals have used this approach with a child who has classical autism, and how successful it was. Anyway, we stopped using it in the end, and Evie seemed a lot happier. I should point out though, that the speech therapist did later comment that it was because we had not been implementing it properly. Instead of Repetitive Paraphrasing we did more work on VI, and on building up Evie’s understanding of language in a very systematic way.
From Sounds to Language and Communication
The next big stage on the Lovaas programme was teaching verbs. We had been criticised by people outside the Lovaas team because we had taught her too rotely. The verbs came next, although she had been working on these receptively for some time already. Once we had a good number of frequently used verbs, we could then ask her about simple actions, e.g. we could ask, "what’s he/she doing?" and she could respond, "bear dancing". She could not at this stage say articles or pronouns, but we wanted the noun+verb combination for now.
Gradually other parts of speech were worked on. Prepositions took a long time to teach, and we are still working on pronouns.
Soon her sentences were expanding nicely. She now uses quite long sentences e.g. "I went to the cinema. I saw Tarzan.", or, "I went to school with Alice. I did PE."
We used the sight-cards from about 3 months into the Lovaas programme to help Evie talk. I have never heard of another child being taught to speak in quite this way, but because we found out almost by accident about her reading skills, we would often just ask for a sound (and later a phrase or sentence) by simultaneously holding up a word-card and tapping it. It also helped Evie focus her attention too.
Now we use the word-cards in a different way. If we want to encourage spontaneous utterances, e.g. encouraging her to say, "can you help please?" if she is stuck on Art and Craft, or whatever, we leave the word-card around on the table and silently point to it. It is a much easier to fade a word-card prompt like this than it is a verbal prompt, although we can now just look at Evie expectantly, or ask, "what do you say?" and she will then respond correctly. Many social phrases are being taught like this, e.g. "No, I haven’t finished yet", "yes please", "no thank you", "can I have another …. Please?" It is also very easy to generalise onto other items too.
Reading
In addition, I should say something about reading per se. I asked a friend of mine, who was a trained primary teacher in a mainstream school, to come and take a look at the programme. She made several recommendations, but one that was extremely helpful to Evie in many ways, was that she recommended we don’t teach reading by sight-cards alone, but get Evie onto a Reading Scheme, preferably one used by the local schools. So we chose "Oxford Reading Tree", as this seemed very much in use locally, and also after trying Evie on a few of them, she loved them. Her speech and understanding, and gradually, the ability to take on board the story, all improved greatly. I did not teach these books on the programme, but out of therapy in a very relaxed way, which I felt to be right for Evie. However, now the tutors do read the books with Evie, and she enjoys them very much.
Evie’s Current Skill Level
Evie’s speech is now meaningful, spontaneous, and frequent, but she still needs a lot of work in this area. We have also done a lot of work on attention, understanding, and chatting socially.
I think one of the biggest encouragements I can give parents with children at the stage that Evie was when we started, is to just stick at it, even when the silence is overwhelming. It seems agonisingly slow at the time, but in fact, given the disability, once she got going Evie did in fact move quite fast. Despite the ongoing problems, a speech therapist recently said, when she saw Evie read a book with me, that: