If the process of diagnosis is taking a long time, it may be that the professionals suspect your child has autism or a related condition but want to be certain their diagnosis is correct. This is important, because it affects the type of help that will most effectively address your child’s needs. Unfortunately, there are delays sometimes simply because of the high demand on services for children with disabilities. ‘Some health specialists may be reluctant and say ‘We don’t like to label children’. Well, we don’t like to label them as parents either, but we have to. Getting that label is the first step to getting some help and you want to know what it is you are dealing with – you just want to know.’ There is general agreement that getting appropriate education and/or therapy at the earliest possible stage maximises the chance that a child with autism will develop their abilities. The sooner you get a diagnosis, the sooner you can begin to get the help your child needs. If you have received a diagnosis, even though you may have thought you wanted definite information, it can still be a big shock.
Many families experience diagnosis as a time of great emotional upheaval. Some families feel they need to grieve the loss of the child they thought they had. Feeling angry or feeling that you must be at fault are normal and common reactions. This process is an important part of accepting your child’s diagnosis, and it can take time. ‘It’s really hard, and often you deal with it on your own. It’s a sense of bereavement really – and very devastating.’ When some family members find it easier than others to adapt to the family’s new situation this can add to the strain. ‘There’s no way of knowing how to deal with each other, how to deal with members of your family who say the most stupid things, like, “Oh, he’ll grow out of it”.’ Some families go through a process that starts with shock and an inability to do anything, and then moves through anger to some sort of acceptance. Different family members are likely to take a different amount of time to go through this process. But parents of children with autism emphasise that it really helps when you reach a point at which you can begin to accept the situation. ‘I think the first most important thing is for someone to tell you that you need to accept he’s got this thing. Once you accept, you can help. I think what we tend to do is feel sorry for our children, and then you can’t do anything.’
Some parents say it’s helpful to think in terms of setting out on a journey. It won’t be the journey you expected or wanted to go on and it will have low points but it will also at times bring rewarding experiences. ‘I read something that I thought was very powerful. It starts off: “I thought I was going to Paris. All my friends were going to Paris and I thought that’s where I was going, too. But I suddenly found I wasn’t in Paris. I was in Amsterdam. I didn’t want to go to Amsterdam. That wasn’t where I’d set out to go. But now I’m in Amsterdam and I’m looking around, and Amsterdam is different to Paris. But actually it’s quite beautiful in its own right.” And why that was very powerful for me was because it was about stopping comparing. It was about, stopping wishing you were in Paris, and starting to look at Amsterdam and to think about what you can do there.’ ‘Someone who also had a child with a disability told me: “You’ll meet people in your life now that you would never ever had met if you weren’t setting out on this journey. You will meet the most genuine, the most kind, the most imaginative people, and if you weren’t entering into this world, you would never have had the opportunity to do that.” ’ However, it’s important not to deny how stressful it can be to have a child with an ASD. ‘Sometimes you have negative thoughts about your child, but when you talk to other parents you realise that it’s quite common, and that it doesn’t mean that you’re a dreadful person, or a bad parent.’ Some parents feel very alone, and unsure of how to cope with social situations. ‘You feel so isolated. I tried to take my little boy to the park but he would run off and hit other children. So sometimes you’re just stuck indoors with him, and you do start to get a bit depressed, really.’ It can also be particularly difficult to handle other people’s lack of understanding.
Over time, you will develop skill in handling other people’s reactions. ‘“Give him a slap”, growled the young workman sitting with his cup of tea reading his Inish Times . The unfamiliar surroundings were making Wee Jonny anxious and he was whining. This time I was ready. There was an awkward silence from the other people in the café. Into it, to no one in particular, I said, in as neutral a way as I could manage: “He has a disability” and left it at that. The workman retreated into his paper. The others relaxed and returned to what they were doing. We had created some space for ourselves. It had worked.’ All parents say that what really helps is talking to other parents of children with autism. ‘Unless you’re fortunate enough to speak to other parents who have been in the same position, you feel that you’re on your own.’ ‘It’s important to be able to share a problem with somebody who knows exactly what you’re going through. You haven’t got to go through the rigmarole of explaining it all – because that’s the depressing factor, I think. But when somebody else has got it as a normality in their life as well, you can laugh about some of the weird things that happen.’
This guide aims to help you to find the information and support you need so that you can move forward and feel more in control.