When long-time NAS (National Autistic Society) volunteer and retired businessman John Franklin found there was little support for fathers and grandfathers of children and adults with autism, he decided to do something about it…
I often say that if you put 20 women together for the first time in a room they will be chatting 19 to the dozen about the most personal of issues within minutes. Do the same with 20 men and, unless they all support Chelsea or have another similar interest, you will see a very different picture. Men are different to women – and not just physically! We’re different in our thought processes and approach to life but, above all, different in the way we handle emotional issues and in our ability to understand and cope with those emotions.
So what of the effect on the immediate family of having a child who has been diagnosed with an autism spectrum condition? Consider the scenario: a young married couple, moving on to build a family and the happy event comes to pass. A young baby appears and all the joy and expectations that follow. Dad might see his son playing football, going out for days fishing or to a motor racing event. If it’s a girl, he may still share with the mother all those expectations of bringing up ‘his princess’ and, at some future date, walking her down the aisle to a chap who is never quite worthy of having his daughter’s hand in marriage.
Quite soon after the birth, it is often the mother who begins to sense that something is not quite right. Perhaps her child does not exhibit the usual child-like reactions as reaching out for her or responding to her voice. Perhaps she cannot hold his or her gaze and the child appears aloof, seeming to not seek contact, or unwilling to offer response to the parents. This can continue for many months and it is sometimes not until the early days at nursery or primary school that the school might suggest there is something that requires investigation.
The child and parents then begin the process of assessment that can be a long and harrowing experience for all the family. It is often the beginning of a series of very long battles, seeking appointments, obtaining, often at great personal expense, professional reports on different aspects of their child’s behaviour, all to build a picture that will, eventually, perhaps, lead them to securing a statement of special educational needs (SEN), the key to much help and support in the years ahead.
It is the constant strain of managing all these steps towards their eventual goal, quite apart from also dealing with their child’s autism, and life in general, that places great pressures on that family unit. Pressure can be further increased where the grandparents, or other close family members, are in denial and effectively offer no support or guidance to the child’s parents. It can be many months, or even years, before relatives may understand or accept the position and swing into action.
On occasions, autism is attended by other medical conditions. For example, a number of children with an autism spectrum condition also suffer from epilepsy.
Then there is today’s way of life in general that can bring added pressure. In recent years, an increasing raft of legislation has given fathers greater powers to become more involved in the development of their children – time off from work, payment of nursery fees, child tax credits and so on. What legislation cannot, however, overcome is the hidden pressure, still remaining, and not always recognised by employers, that one must be seen to perform. In 2006, a survey by the National Childbirth Trust found that 40% of those responding said that work commitments reduced their involvement in family life. Also, what legislation alone cannot bring about is individual support targeted at, and for, the father. Neither can it easily convert an uncaring employer into a caring employer.
The main breadwinner is still often the father who becomes the ‘nine-to-five’ worker bee and who is thereby often excluded from attending daytime medical and school appointments unless he has an understanding and caring employer. This leaves the mother in a position where she has to explain the content and meanings behind a long and complex medical meeting that day.
In this scenario, much can be lost in translation and this is just one of the elements that can lead to a father developing a feeling of being excluded, albeit quite unintentionally, from important issues that affect his child and their future.
Time and again at our Fathers’ Club meetings, this issue has come up in discussion. Frequently the father may have few, if any, contacts with whom he might discuss his feelings, always assuming he felt able to do so. Men, as I said earlier, are generally not so good at discussing their emotions, their feelings, but of course must always been seen to perform.
For some fathers, the admission of having a child with autism may be seen as failing and none of us want that, do we?
So we have the situation where Dad has been at work most of the day, sometimes with a demanding job and involving long journey times. Mum has been at home with household chores, shopping, perhaps a medical or school appointment and having the child, possibly with other siblings, to care for. Other siblings can add still further to the pressures since the child with autism will be seen to be getting more of their parents’ attention than they. In their eyes, they can ask, perhaps rightly: ‘Why is George getting all your love/attention/time?’
All these pressures can lead to an explosive situation in the evening and it is not unknown for the father or, on occasions, the mother, to simply walk away, once the pressures become too great.
So, six years ago, with the aim of providing fathers with the support and guidance often not available to them elsewhere, I formed The Fathers’ Club in Kent. The club is unique in that it meets at regular venues, in the evening, once a month, throughout the year, providing a forum where fathers can debate all the issues that affect them and their family. It enables fathers to discuss what has worked for them and share best practice with one another. They attend without cost, as and when they feel the need.
Support is also on hand between meetings when I respond to questions from members or disseminate useful information to them that has come in from other sources. A free library of relevant book titles is maintained, as well as a database of ‘solutions’. These might be to do with a child who has started smearing or stuttering and the parents are asking why, or parents seeking information about schools in the area and so on. Autism-friendly film shows, organised for half-terms and holiday periods, have proved to be very popular.
The club also pursues, with Government and other bodies, issues that are of concern to members and these are reported back through our regular Fathers’ Club quarterly newsletter, The Report. Another significant benefit of the Club is the spread of ages of the members’ children. We have members whose children are just three or four years of age and others with children in their 20s and 30s. For the father of a newly-diagnosed child of three or four with autism, setting out on that long path of discovery, seeking help and advice, there can be nothing better than chatting things over with other fathers who have ‘been there, seen it, and done it’.
So what makes a successful club, a support and guidance group for fathers of children on the autism spectrum? I’m not sure I have a categorical answer to that one but would like to share with you an email from a father (of a five year- old son with autism) who had just attended his first meeting:
“Hi John and thanks for the email. Last night was certainly an eye-opener. I have to say my emotions ranged from laughter to frustration to panic at all the dads’ experiences. Having said all that, no matter how harrowing the story, I could see that the bond within the room made everyone’s plight a little easier. Which makes this group so worthwhile and so important that this support is readily available. Looking forward to seeing you at the next meeting