What is interesting is that, as difficult a disability as autism can be, difficult children often produce difficult parents. Perhaps it comes from our deep desire to improve our child’s quality of life. (I myself am the mother of an autistic boy and I have to confess… I am difficult.) I have met hundreds of parents of children with autism over the years and I’d like to give you my classification of the parents of autistic children.
It is conventional to classify autistic children according to the impairments of social interaction and describe their varieties by grouping them into 4 main types: the aloof group, the passive group, the “active but odd” group, the over-formal, stilted group (Wing, 1996). I try to do the same with the parents, using almost the same headings, though the subdivision the parents fall under does not necessarily coincide with that of their child. Besides, like their children, with time, the parents can shift from one subgroup to another.
Depending on what stage they are in, and how they have come to cope with their situation, they fall into four categories:
The aloof group. This is, probably, a very common type of parent in countries of Eastern Europe. These parents believe the “specialists” when they say that their child is hopeless. They may or may not institutionalise their child, as advised. If the child is kept at home, the family tries to “hide” him/her from people, feeling ashamed of having such a disabled child but still loving him. They feel helpless to change anything in their life. They are typically very sensitive to the stares of people while out with the child in public and always end up with tears of shame and bitterness. They avoid social contact and live in their own isolated world, and the child is cut off from the world not only mentally but also physically.
The passive group. These parents are not completely cut off from other parents. They are sure there must be a pill or a treatment that would solve all their problems and, sooner or later, it will be offered to them. They accept all the offers they are given, they are very obedient, and often the child is traumatised when the parents agree to place him into hospital and treat him with medications and injections prescribed by the “specialists”. These parents have no doubt that “the specialists know better” and do what they are told.
The “active but odd” group. These parents are very active. They look for any information in their attempt to find a “cure” for their child’s autism. They travel to different cities or even to different countries just to consult the specialist they have heard of or to try the treatment they have read about, irrespective of the effects (or ill-effects) (e.g., holding therapy might be tried despite the child’s hypertactility). They are sure they do their best for their child, and are ready to spend all their money on the most expensive treatments. Their love is great, but perhaps “blind” as well. Sometimes the children benefit from it, sometimes they are harmed.
The professional group. (The name does not coincide with that for the children.) Fortunately, this is a numerous group, and growing. These parents decide to change their focus and become “professional parents” for their child. They start with the assumptions that specialists might be wrong, they cannot know everything; that research is being carried out, and what is considered to be right today may turn out to be wrong tomorrow; and that nobody knows their child better than they do. Like the third group, these parents actively seek information, but are reluctant to try everything. They are akin to permanent students, with a desire to learn about all the theories and approaches to find the right ones for their own child. They are very critical and express doubts about everything. They question and want explanations, rather than accepting information at ‘face value’.
Because they know it is impossible to help their child without helping others, they unite their efforts and work together. It is these parents who establish organisations and societies aimed at building a brighter future for their children. They seek cooperation with open-minded specialists and scientists, and fight against ignorance and the incompetence of bureaucrats. Their efforts and activities give us hope and keep us moving forward.
I have to admit – I do admire the difficult parents who make the lives of their children easier.
To read Part 1 of this blog post, click here.
To learn more about parenting a child with autism, check out Bogdashina’s latest book: Becoming a Professional Parent