Parents - We Cannot Do It Without Your Help

We all know how powerful ABA is in teaching children, and particularly the teaching power of EIBI which can reduce the effects of ASD  to the extent that they are not obvious in 50% of the children. What does EIBI stand for? Early Intensive Behavioural Intervention. The 'I' stands for 'intensive'. The studies which provided those dramatic results all provided intensive therapy - 30 to 40 hours per week, which is nor financially possible for many families working with ISADD; even where government funding is available, it does not meet such levels. Besides all the modern literature on ABA emphasises the  importance of parent participation in the therapy. It also emphasises the importance of making the training functional for the child and moving away from the therapy table to the family environment.

As a parent you can make considerable gains both by providing more intensity and involvement in family activities, by taking on more responsibility in teaching your child. However, this is where we have a  problem. Even many of the keen parents who start out with every intention of participating seem to fade. Why is this so? There are several pitfalls which need to be overcome if the more considerable gains are to be made.

First there is lack of information. I still meet parents who believe that children will grow out of Autism. I am sorry, they will not. The symptoms may change, but without support they are most undesirable. In fact I tell parents that children 'will grow into' their symptoms, making them much harder to change. I find it interesting that parents often do not seek the information, presumably protecting themselves from possible bad news. Yet would they buy a car without checking it out?

Then there is denial - a mechanism we have to avert serious depression. If we believe in a positive outcome without taking action, we may reduce our stress for the time being, but not escape the negative consequences. This is a very easy situation to fall into. Initially, as the child grows there will be some positive gains, even with minimal intervention, and that can boost us. However, when we compare  this child with age-peers we will see that gains are not going to be sufficient.

On the other end of the scale is depression. As this reaches high levels it makes it impossible to do much of anything, other than give up. As many parents have told me working with their child raises their levels of depression as they are made to remember that there is a serious condition; that their child is not like other children. Often this makes them incapable of what is needed, or they may slide to the other end, overcompensate and invest in denial. To some this becomes a see-saw experience. The only way to get out of this is to experience success in teaching, and regain confidence in their parenting.

Another difficulty parents often have is the feeling that they need to compensate the child for the diagnosis by providing extra protection. Siblings often complain that the child with ASD is favoured and spoilt. To understand what is going on we need to consider the power of the parental instinct to protect their child. This may sound silly, but it is strong and very  visible in  all species, not just humans. It is the basis of continuation of life, and makes the continuity of generations possible. So parents respond with raised anxiety when they hear their child cry. However, therapists so often complain that this leads to behavioural situations where the child learns to cry or even have full melt-downs to escape a learning opportunity. We all know that novelty will usually be resisted by people with ASD, and a new learning situation is no exception. The child complains and takes a stand, making it difficult for parents to undertake teaching, and making it difficult for therapists if parents interfere to "save" the child. This can lead to an impasse; the child is reinforced for protesting, parental stress rises, therapists' frustration grows and little learning takes place while the situation drags on. Alternatively, parent and therapist need to agree that the child is not in pain, not hurting, but just protesting, and possibly getting angry. The new learning situation needs to be modified to aim at success for both child and adults, and the problem can be overcome in so much less time.

It is easier for parents to overcome the anxiety and the depression if they are more aware of what the therapy is trying to achieve, if they participate in the activities and can see themselves as playing an active role in their child's skill development. Here are some tips on how this can best be achieved.

• If starting out, take time to really learn how to teach. Your skills need to be at the level of the therapists. If you are not new, you can still get the skills. It  is  most important for you to realise how your child learns, what he/she finds reinforcing, motivating and interesting, how best to introduce new tasks and how to prompt. You need to know how and when instructions are best given.
• Involve yourself in the first session if you are starting out, or else watch the therapist, then take over - work in tandem; do not let the therapist become teacher while you remain as passive observer or just assistant. This is a team effort and you will need to be an active member, but the therapists and Case Managers are there to help you.
• Take time to do a little of the work yourself, even between  sessions.  You do not need to sit down and do a whole session. Even doing one drill that needs practice     is    enough, as long as it happens often in spare minutes. Language drills are very portable - and you should be using items around you - not the pictures in the therapy room.
• Ask what is needed for generalising the specific skill that is targeted. This is best in writing. Make this a priority and include in daily  activities. Involve  the rest of the family. You will be surprised how it speeds up learning as it provides extra practice and does not allow the child to forget between sessions. Here are some examples but your therapists will give you more - make them specific to your child:
  • Teaching greetings - take to  door when door bell rings and cue your friends into responding.
  • Teaching prepositions - get child to help unpack the shopping and put things way.
  • Teaching nouns - label items or ask child what they are as you hang up the    washing, select fruit and vegetables in the supermarket etc - you can also add adjectives when your child is learning them.
  • Visuo spatial organisation - loading the dishwasher is better than a heap of blocks.
  • Early number skills - setting the table
  • Clock time - get child to tell you when you need to be ready to go out - have a clock face (or dead clock) set to the time and child needs to note the similarity.
  • Classification - put an orange and a potato on the table, as you prepare to cook. Give the child an apple and ask which one it should go with. Then give a carrot - and even though it is orange, it goes with the potato.

Reduce screen time. Remember that more TV means less IQ. Our children are particularly vulnerable to obsessions and repetitive behaviours, and having good, and often superior, visual memories can then sit calmly and replay the DVD you have put away. This sort of stim is the hardest to manage. Instead of using the TV as a baby-sitter, give the child things to do. Our children find it difficult to initiate activities and may remain passive or inappropriately occupied if not guided. Your Case Manager can set you up with an independent activity schedule. Chances are your child already does that in therapy, so you can take over. If you set the child up to do several activities before coming to you to show and seek reinforcement, you will have some quiet time to attend to other matters. Do not be afraid of including household chores, as our children usually are very happy to do these and are proud of their achievements. Remember they do not play spontaneously, until taught, and they do want something to keep them busy.

At this point you may be saying that you do not have the time to do all that. Can I suggest you add up all the hours that you and your child are together and you will be surprised how many that is. Even parents who work outside the home spend time with their children. If a large proportion of that time can be made to also include interaction with your child, your child's program will be gaining in intensity. But what is more important, you as a parent will be communicating and interacting with a child who otherwise may be much harder to reach, and that should be very, very satisfying as well as reducing any confusing emotions of anxiety or depression.

Jura Tender.