Autism knows no geographical boundaries… it affects parents in the same way the world over…

Autism is, probably one of the most difficult of all disabilities to cope with. Of course, it would be wrong to define disabilities as “better” or “worse”, but it is justifiable to assume that autism does bring a great strain in families, incomparable to other disorders.

There are several reasons for this. First, very often autism is difficult to identify; it is in a way “invisible”. There is no evidence of any disability in the child’s appearance, in contrast to, say, children with cerebral palsy, Down’s syndrome, or physical impairments. Hence, the child’s often “bizarre” behaviour is misunderstood and misinterpreted (“spoilt, naughty child”!) and parents are under constant stress for being blamed for their inability to discipline their offspring.

Secondly, in addition to the negative attitude from the outside, parents often feel rejected by their own child, creating a feeling of uselessness and unreturned love on the inside.

And lastly, it is a great physical and emotional strain to raise a child who can live without any sleep for more than 20 hours, who doesn’t eat food prepared for him/her, who might be aggressive and get into  tantrums out of the blue – in short, who needs a 24-hour supervision, each day, every day.

The period between diagnosis and acceptance can be very long and very painful, a period during which parents go through several stages:

1)    Denial: They don’t want to believe their beautiful, beloved son or daughter has a disability.

Sometimes they do feel that something is wrong with their child (especially, when they compare him with his peers). At other times, however, they persuade themselves that all is well, that their child is developing normally (He passed his major milestones at the usual ages, didn’t he? She is so good at switching on the TV or finding the video she wants, isn’t she? His eyes are very deep and wise, aren’t they?). They find their situation hard to accept, and very often get offended when friends or relatives mention some strange features in the child’s behaviour and suggest that they consult a doctor.  To stay at this stage too long is very dangerous, as the sooner the diagnosis is made and the intervention is started, the better chances the child has for the future. I know personally some parents (fortunately, very few) who refuse to accept the truth and deny the necessity to meet their child’s special needs: “He is normal. His father was also slow in acquiring speech, but now he is an engineer”, etc.

Unfortunately however, with this attitude, it is very often that the child is harmed.

Very often it is the child who is harmed by this attitude.

2)    Shock follows. The reality of having a child with autism often causes shock. No matter how well the parents are prepared to “learn the worst”, the fact that “the worst” has happened brings shock which is followed by:

3)    Helplessness: At this stage, parents are emotionally paralysed, unable to do anything. At first, they feel helpless because they don’t know what autism means and what they are to do. Paradoxically, the more the parents learn about it, the more confused and helpless they sometimes feel. Very often, they think that they are the only family in the world to have a child like this, that nobody can understand their problems. (To know that there are many others in the same situation brings a great relief and desire to seek help.) The feeling of helplessness is often followed by that of:

4)    Guilt: All parents feel it, and question if they are to blame for the child’s disability. This is the stage when families either get stronger, uniting their efforts to help the child, or split up because the parents blame each other or each other’s relatives on having “the wrong gene”. Along with guilt often comes shame. Some parents become ashamed of their child, not wanting to take him out in public, or reluctant to talk about him with their friends as if he didn’t exist, etc. They view the pain as punishment for something they have done in the past. Fortunately, most parents move through this issue, but are met with an equally challenging set of feelings.

5)    Anger: Parents question, Why our child? What did we do wrong? Why do other parents drink, smoke and have \’normal children and we don’t? Sometimes, subconsciously, the parents feel pity for themselves. In the cycle of acceptance, this is another dangerous stage to get stuck in, as parents tend to put their energy into blaming everybody and everything for their misfortune, rather than seeking help.

It is necessary to note that some parents miss one or two stages, some stop on certain stages longer than the others.

After having gone through all these emotional swings, the parents then reach a point with several paths to choose from. The choice is very individual and depends on personal factors.

One (and the best) option is to come to acceptance, loving the child for who he is and for the very differences that make him unique. Other things to do are to stop feeling pity for themselves, to enjoy the company of the child. As a result, the family is happy and united in their efforts to improve the quality of the child’s and the whole family’s life. They become proud of their child’s progress. Even the smallest signs of the improvement (he buttoned his shirt, she managed to put on her socks, he answered “yes” to the question) are seen as triumph and victory for the whole family in this ever-lasting battle for their child. The parents do not feel ashamed of their child and take him out everywhere, trying to involve him in all their activities as much as possible, ignoring the stares of ill-educated people.

A very good tool to help, I think, is a good sense of humour! It can often transform a seemingly devastating situation into an amusing story to share with friends and relatives. As an example, a few years ago there was a reception of some Ukrainian officials at the Town Hall in Barnsley where I was interpreting. My autistic son was at the same room sitting near the door with one of my friends. After the official part of the reception, an invitation to have a drink followed. At that briefest moment of complete silence when everybody turned to go to the tables, my boy said very loudly: “But first, everybody to the loo!”  The Russian-speaking attendees roared with laughter. Yes, I was embarrassed, but so what? It happened, and now I cannot help smiling when I remember this episode!

Stay tuned for Part 2 – where we will look at the different groups of parents.

To learn more about parenting a child with autism, check out Bogdashina’s latest book: Becoming a Professional Parent