Although I am harsh on the purveyors of false hopes who prey upon the fears of parents of autistic children it is important to remember that those fears are real. They may not be justified. They may be fuelled by the media and unscrupulous researchers and clinicians. But they are real nonetheless and parents need help in dealing with them.
I offer this excerpt from a book I wrote 6 years ago while recovering from my own mental breakdown as a way into analysing parental responses. I welcome any better ideas.
A. Parental responses – the worrier
The worrier parent cannot get over their guilt. They want to know why their child is autistic. Was it their fault? Is there a cure or therapy that can help their child that they are not trying? Whenever the media trumpets another “breakthrough” in the treatment of Autism it adds to the pressure.
They come across the wealth of anecdotal evidence that diets, vitamins and different drugs can help some children with some aspects of their condition. Of course, friends and relatives are always hearing about miracle cures and interventions. These are usually very expensive and only obtainable on the other side of the globe. So, why aren’t you mortgaging your other children’s college fund and your pension to cure your child? Don’t you love him enough? Or perhaps he is not really that autistic? Grrrr!
If you are the parent of a child with severe eating or sleeping problems, destructive or self-injurious behaviours, tantrums or prolonged periods of distress, and you are getting little or no professional support or advice that actually works for your child then you will try anything. Without serious research into the worthwhile interventions they have to bid for credibility alongside the shysters and hucksters promoting their snake oil remedies.
The National Autistic Society has published a booklet which describes over 40 different approaches; some are dietary, medical or educational and some are just plain weird. Most are worthy of attention (NAS 1997). But there are very few people “on the ground” to whom parents can turn for guidance. In the UK parents who approach their local health providers for “alternative” therapies are often viewed as cranks. In the USA these treatments are more widely available if your health insurance is prepared to pay. So the worried parent has to face the prospect of confronting an unsympathetic medical establishment or living with the guilt that they are not doing enough for their child. This sort of dilemma can lead to passivity, resentment and bitterness directed at more assertive parents who should be your natural allies, thus increasing your isolation.
B. Parental responses – the warrior
The Warrior represents the other side of the coin. They are going to get the best there is for their autistic child. They have their rights and if something is not done someone is going to pay. There is nothing wrong with trying to get the best there is for your child so long as you do not lose your way. My own trajectory from worrier to warrior was fuelled by guilt at not being assertive enough and then overcompensating by taking up a completely adversarial position. With hindsight it sometimes appears that I was less concerned with what was right for my son than I was with the desire to get the faceless bureaucrat whom I blamed for all our grief.
C. Breakdown and Conflict
It is easy to see how this can happen. The parents notice something about their child. Their fears are dismissed. They read an article about Autism and recognize their child in the article. They research the subject. They pester the authorities. They become a problem to be dealt with while the child’s needs are ignored…
Both warriors and worriers can become overprotective towards their children. Because of this the children may learn to define themselves by their condition. One example might be the child with a learning disability who could manage to achieve a reasonable level of independence in adult life. But if given a sick role to play they may learn to play it to perfection and always be dependent on others for things they ought to be capable of themselves.
It is easy to see how this could happen. The parent is told their child has a problem but receives very little support in coping with the news. For some the child becomes their permanent baby that they will love and look after for ever and ever. Such parents are very loving but can impede a child’s progress by doing everything for them and spoiling them completely.
These children have a genuine difficulty and parents who want was is best for them. The parents just need some guidance and reassurance. No professional is allowed to be alone in a room with children until they have completed their training. Parents of children with special needs are expected to get by on their own with no training. As primary caregivers we ought to feature prominently in the in-service training budget of every agency that deals with autism. Because if we cannot cope you are going to have to train someone else to replace us and pay them as well.
Often aspects of both warrior and worrier are present in the same person at the same time. We are used to living with contradictory ideas. It is only when the contradictions become too acute that breakdown occurs and many parents do experience breakdowns.
So those dealing with parents need to be aware that we have special needs as well. Health and education officials ought to develop a ‘bedside manner’ and be gentle and supportive. Above all what we need is honesty. If the provision is not there because of cuts in government expenditure and the authority cannot afford what is best for my son, tell me! Do not pretend that you can meet his needs within existing provision when it is patently obvious that you cannot.
Parents do want a partnership with professional agencies to help our children. If the system needs a shake up we can do the shaking. We are not constrained by professional etiquette. We can court publicity in ways that might be inappropriate for public servants and state employees. Both worrier and warrior can be positive if we worry about the things that matter and go to war against the right targets. We can be your friends in low places, humbling the mighty.
So, to all who have dealings with the children with Autism I make this appeal.
Take the parents into your confidence, as we take you into ours by entrusting you with our children’s future. Do not patronise us, dismiss us or attempt to pigeonhole us. We may not always know what is best for our children. But, rest assured, we always want was is best for them.
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Taken from “Learning to Live with High Functioning Autism” by Mike Stanton.