The
Role of Education in Nutritional Management.
By
Dr. Natasha Campbell-McBride
Copyright
Reserved
“I have probably learned more in the first five
years of my life than during the rest of it.”
Lev Tolstoy.
So far I have published mostly on the subject of nutritional management
of autism. However, parents of autistic children often ask me questions about
education of their children. As most of you know, the word “education” in the
case of our children means so much more than just school, literacy and
numeracy. For us it means to teach our children to understand speech, to speak,
to behave normally, to play with toys appropriately, to have normal social
skills and lots and lots of other things, which parents of normally developing
children never have to think about. In this article I would like to describe my
view on this subject.
A normal child learns from the moment it is born. Have you ever
observed babies and toddlers? They are like little sponges, listening to
everything, watching everybody around them, absorbing every little bit of
information from their environment and learning, learning, learning. Their
brain cells develop very vital connections and circuits, which will serve these
children for the rest of their lives.
Autistic children miss all this learning. Due to their toxicity their
brains are not able to process information properly, so these children are not
sponges in those very important first formative years. They have normal ears,
eyes, taste buds and sensors in their skin. But all the information these
organs receive is then passed to the brain to be processed. A brain, clogged with
toxicity can not process this information appropriately, so autistic children
do not hear, see, taste or feel the same way a normal child would do. Highly
functioning autistic individuals, who lecture about their disorder, tell us
that they can not hear certain frequencies, that certain sounds hurt their
ears, that they may not hear parts of words said to them or hear them in a
distorted way. They say that they can not see certain parts of the light
spectrum, some parts of written words, they get lost or disoriented in
fractionated light, for example a shadow of a tree or flickering electric
lights, some parts of the light spectrum hurt them. They describe touch from
certain fabrics and people’s hands as unpleasant as the “pins and needles”
feeling we can get after sitting uncomfortably. A lot of these autistic
individuals say that many foods taste bland for them and the texture of the
food can be offensive. All the sensory input from eyes, ears, skin, mouth turns
into a jumble in their heads, disorienting, sometimes pleasant, sometimes
unpleasant and sometimes frightening. That is why these children develop all
sorts of behaviours which look bizarre to us, but would probably make perfect
sense if we took into account what happens to the sensory input in their
brains. Their brain cells do not develop normal connections and circuits.
Instead they develop abnormal brain cell connections and circuits. Some of
these circuits show themselves as self stimulatory behaviour or self
destructive behaviour.
The longer this situation goes
on for, the more normal learning these children miss and the more they fall
behind their normal peers. Normal children never stop learning, so for an
autistic child to have any chance of catching up with them he or she has to
learn at a double speed. The earlier this intensive learning starts the more
chances there are for an autistic child to catch up simply because he/she
missed less. The older the child is, the more he/she has missed out and the
more he/she has got to catch up on. Apart of learning all the normal things,
the teaching has to undo all the abnormal patterns and behaviours the child has
developed. Again the older the child is the more difficult it becomes to break
abnormal brain cell circuits and build normal ones. So, there is a definite
sense of urgency for parents of newly diagnosed autistic children in starting
appropriate education as soon as possible.
The question is – what education?
I would not attempt to describe here all existing methods of educating
autistic children. There are many of them and you can find many sources of
information on this subject. Some methods aim to create an artificial
environment to suite the child’s needs. Other methods try to change the child
in a way that he or she can fit in the normal world and lead as normal a life
as possible. At the end of the day it comes down to parents, their abilities,
determination, and resources as to what method is chosen.
However, no matter, what method is chosen, any educationalist with an
experience in teaching autistic children would agree, that to be able to
achieve the most, an autistic child needs one-to-one
teaching. This teaching has to be intensive
and very structured. It can not
be just any teaching. It has to be conducted
by specially trained people. Every skill has to be broken into the tiniest
possible steps, manageable for an autistic mind and taught step by step making
sure that all the previous steps are solidly learned and used by the child. A
normal child would learn every minute he or she is awake, so the teaching has
to go on for as many hours a day as possible, every day. And we must not
forget the sense of urgency if your child is to stand any chance of catching up
with normally developing children of the same age. Those children are not
standing still in their development, so the goal posts are constantly moving.
There is not a moment to waste. I personally know only one method which can
achieve all that.
It is a method I am most familiar with, having used it with our son
Nicholas, and the one I believe in the most - Behaviour Modification Programme
or Applied Behaviour Analysis (ABA). This programme for autistic children was
developed by a Norwegian psychologist Dr. O. Ivar Lovaas and his colleagues at
the University of California in Los Angeles (UCLA). He started his
groundbreaking work in the 60s and the programme is still evolving. It is the
only programme for autistic children in existence which has got solid published
scientific data behind it. The initial study on the efficacy of this programme
was done by Lovaas and his team. It produced an astonishing result: 47% of
children completing this programme achieved normal intellectual and educational
functioning, with normal range IQ scores and successful performance at
mainstream schools, another 42% were mildly retarded and went to special
classes for the language delayed, and only 10% were profoundly retarded and
assigned to classes for autistic children. In contrast, only 2% or the control
group children achieved normal educational and intellectual functioning; 45%
were mildly retarded with language delay and 53% severely retarded and placed
in special schools for autistic and retarded children. The treatment group
received 40 hours a week of intensive one-to-one behaviour modification
teaching, the control group received 10 hours a day of one-to-one teaching. The children started
the treatment before the age of 4 and the programme lasted for at least 2
years. The results of this study were published in a Journal of Consulting and
Clinical Psychology in 1987. Since then this study has been replicated in many
other universities, mainly in the US, with similar results.
All these studies concentrated on children under the age of 5. Based on
that, for many years it was a general understanding that ABA can only be done
with very young children. However, in 2002 Dr. Svein Eikeseth and his
colleagues have published results of their study which demonstrated that older
autistic children, age from 4 to 7 can make large gains with intensive behavioural
treatment. In parallel with that there are several articles published mainly in
the Journal of Applied Behaviour Analysis which show that the ABA programme
works not only for children but for adolescents and adults with autism, though
there are no formal studies published yet.
So, developed initially for young children with autism the ABA
programme can be effective with all autistic individuals - children and adults.
However, one point still remains – the earlier you start this programme the
better results you can expect.
We started the ABA programme
with our son when he was 3,5 years of age. At that stage he was very autistic, had no expressive
language and his comprehension of language was very questionable. At the end of
our first workshop our ABA consultant said to us that in 3 months she expected
our son to speak in small sentences. None of us believed her,… but she was
right, he did. We have meticulously recorded that period in his life on video.
In 3 months from the start of the programme we could have quite a sensible
conversation with our son on subjects which interested him. We had a team of 5
therapists, who we had trained. Our consultant was coming to us every 3 months
to do a consecutive workshop. Between workshops we tried to do at least 35
hours of therapy a week. Our son loved his therapy. All these nice people were
coming every day “to play with him, because he was their friend!”, for every
small achievement he received a lot of enthusiastic praise and rewards (toys,
games, tasty things), he went to all sorts of interesting plaices to do his
therapy, like supermarkets, parks, playgrounds. Between the therapy sessions
with the therapists, we the parents had to pick up and as we went about our
usual daily routine, we did everything the ABA way – eating, cooking, playing,
bathing. The programme was very tightly structured with no time to lose or
waste. In 12 months our son was able enough to go to a reception class in our
local mainstream school. He continued to do his programme in the afternoons for
another year. After that the number of hours were slowly reduced to nothing.
Now he is 9 and, being as objective, as a trained neurologist can be and as
subjective as a mother can be, I do not
believe that he could be diagnosed as autistic any more. His language is normal
with a larger than usual vocabulary, he is in a mainstream school and his
academic achievements are within his age range. He plays with other children
and has got friends. His attention span can still be short, if what he is doing
is not interesting for him, he can be naïve at times and amazingly mature at
other times, he can sometimes prefer his own company to others. I suppose all
these things can be said about many normally developing children. Looking back
now at those years of intensive therapy I have to say that it was very hard
work. But we do not regret a minute of it, and there are other bonuses in
having been trained in the ABA programme.
You become a more efficient parent for your other children and you
understand so much more about behaviours of adults around you too.
One particular area where behaviour modification is very helpful is
introducing new foods into your child’s diet.
It is very rare to meet an autistic child, who is not a finicky eater. The majority of autistic children have feeding problems, sometimes very severe. Some are just very fussy and would accept only a very limited range of foods. Some can not chew properly and would hold food in their mouth for a long time or try to swallow it in a lump. Some can only suck from a bottle and would not drink from anything else. Feeding time is a nightmare for many parents of autistic children. There are many physiological reasons for these feeding problems, but the main question is, what are we to do with them?
It is the appropriate nutritional management aimed at normalising gut
flora and detoxifying the child that will eventually make foods taste properly
to him or her. But how on Earth can we apply any nutritional management to a
child who would not eat anything? Indeed, this is the hardest point for many
parents in managing their child’s autism.
I generally don’t believe in hopeless situations. Where there is a will
there is a way! There is a way, a very efficient way of introducing foods into
your child’s diet. It requires a lot of determination from the parents but it
brings a huge relief and quite a bit of normality into your family’s life. This
way is ABA or behaviour modification. The main principal of this method is
based on common sense used by parents for centuries. I am sure you all recall
your parents telling you “If you want your desert, you have to eat your main
course !”, or “First you have to do your homework, then you can go and play!”,
or “If you want to go to the zoo on Saturday, you have to….”. So, the formula
is – if you want something, you have to work for it!
If you are already doing an ABA programme with your child at home you
can make feeding a separate drill for your therapists to work on in the
sessions. So, at least for couple of meals a day all you will have to do is to
cook the food and bring it into the therapy room.
So, let us see how do we introduce new foods into the fussy autistic
child’s menu?
Initially use preferred foods (foods, that he or she loves) as rewards
for eating the foods that they don’t want. Show your child the food he/she
likes the most (a piece of chocolate, couple of crisps, a piece of biscuit,
etc.). Put it out of his/her reach but in clear view. Offer your child one
mouthful of the food you want to introduce. Ignore tantrums, screaming, crying
and all other misbehaviours. Do not give him what he wants until he had that
one mouthful of the good food and do not let him leave the table. When he had
only one mouthful of the good food, give him the preferred food as a reward
with lavish praise, hugs, kisses, tickles (whatever your child would most
appreciate) and let him go. In a few minutes repeat the whole procedure again.
Only work on one mouthful at a time, reward and let him/her go. In a few
minutes repeat again. Give your child only a small amount of the reward food:
one or two crisps, a little piece of chocolate, etc.. If he comes back for
more, get him to eat another mouthful before rewarding him. These reward foods will have to be available
only as rewards for eating the good foods, they must not be given to your child
at other times, otherwise your child will wait for that time when he can get it
without any effort. Keep the whole procedure positive and as happy as possible.
After your child starts to take one mouthful of a particular food without any
trouble anymore, start demanding two mouthfuls of the same food for the same
reward. You may spend a few days, a week or even more on the one mouthful
stage, in different children it takes different effort. After you have
conquered the two mouthfuls, move to three mouthfuls for the same reward.
Slowly increase the number of mouthfuls until your child eats the whole meal.
The examples of reward foods I gave here (chocolate, crisps, biscuits,
etc. ) are all foods that should not be in your child’s menu at all, but in
this initial stage use whatever works to get him or her to eat the good food.
As you increase the number of mouthfuls for one reward, automatically the
amount of these reward foods consumed will be reducing in proportion. Later on
try to move to using toys, games, books, videos or anything else your child
likes as rewards. If he or she likes “peek-a-boo” or having a round on your
back playing “horses” use these games as rewards. It may sound a bit too much
exercise for you for one mouthful, but if it works, so be it.
In the case of our son we had severe feeding problems. He was an
extremely finicky eater and he could not chew his food properly. But he liked
to watch videos, so we used that to work on his eating habits. We would put his
favourite video on, let it play for 5 minutes, then pause it and offer him a
mouthful of the food which we wanted to introduce into his diet. We would not
switch the video back on again until that mouthful was eaten. We had tantrums,
screaming, crying, etc., all of which had to be ignored. As soon as he had the
mouthful, he would get a lavish enthusiastic praise with hugs and kisses and
his video back on. Fairly soon he understood the rules of the game and our feeding
time became so much easier. We started to use his favourite books as rewards,
reading a page for him for every mouthful, sometimes we used toys and games.
However, on some particularly tough items like a spoonful of Cod Liver Oil, I
had to resort to a piece of chocolate.
Now, after all those efforts, years down the road I get this from my
son: “Mummy, if you want me to eat my dinner tonight, you have to play this
game with me!” .
Coming back to behaviour modification the person in our family who got
the best training in this method is probably our son. He uses it with his
brother, his friends and, I have to admit, with his parents.
As one of my friends, who was doing the ABA programme with her little boy, put it: “It is amazing how powerful this method of teaching is! With this programme you probably can teach a hippopotamus to speak!” . Whether you can teach a hippopotamus or not I don’t know, but in combination with appropriate nutritional management this programme can achieve one of the best outcomes for your child.
I firmly believe this!
August 2002