Thank you for inviting me today and your warm welcome.
I’m setting up this group to help prevent other families in the area going through what we went through when our eldest daughter was diagnosed autistic. Until that day we had had a fair few local friends that we went on play dates with, met over coffee and at the local play groups. After my daughter’s diagnosis we were completely abandoned by most local friends. One friend stayed in touch and one of her children was later diagnosed as autistic. She maybe had an insight into what we were going through as a family. Seen then we have been lucky enough to make more local friends, of children with similar levels of disability or from families who can accept our daughter for who she is. Despite her difficulties, my daughter is a wonderful, loving little girl who take full care of her pet cockatiel – which is pretty good for a nine year old!
I believe all of our autistic children have amazing potential – the thing is that as parents we have to be ready to drop our preconceptions of what we wish for them and fully embrace and support them in what they want to do. This isn’t always easy however – especially if one is feeling isolated from the rest of your local community. This is why I want to set up the Burghfield Autistic Group – so that local families can meet, share stories and let off steam in the same way that ALL parents do about their children. Autistic children are more often found in main stream schools than SEN schools as only about 27% of the autistic community has learning disability as a co-morbid. Most of us fulfil the stereotype of the Great English Eccentric, and can be found propping up the walls of universities, computer labs etc. I think without us, you’d be hard pressed to find genius and progression in engineering, the arts, the sciences etc. Our problems lie in the area’s of social communications – which can affect all area’s of life – from school work, to sorting out what some consider the basics of life such as paying utility bills or going to the doctor. In fact autistic people have 14% less life expectancy due to the issues we have communicating our needs to our doctors. I have had recent experience of being called a drama queen by an A and E nurse in the middle of a life threatening asthma attack. Just after this she said my observations were fine, so I tried to go home as I felt I’d been told I was making a fuss. As it was I was too ill to move and eventually got treated appropriately. But as you can see, because of our communication difficulties, most autistic people will run into situations like this.
This is another reason for this group – it will give our children the chance to practice appropriate communication with their rightful peer group. Most (75%) will be experiencing bullying at school, 85% will be experiencing sensory difficulties which will be affecting their ability to learn. Sensory difficulties arise from our over sensitive senses which mean we take in much more light, much more noise, much more taste etc than non autistic folks. This is why I’m hoping to hire the Village Hall – lots of windows mean I can avoid turning on the fluorescent lights (most autistic people are bothered by the flickering and/or buzzing from them, that non autistic people are oblivious too). My son attends a wonderful main stream school but often comes home with a headache which means he can do very little for the rest of the evening. Then of course he is not fully rested for the next day at school and the onslaught of noise. He has also had to drop out of local clubs for the same reason. Trying to make friends whilst being bullied by peers and being physically in pain from the environment around is hard work! Hence it would be my hope that this group would support local families and children to make friends with each other.
Another quirk of autism is that we really don’t do small talk. As you may have noticed I have very little interest or skill in it – what little there is has been built over many years of painful practice. It’s much easier for us to come together over something we’re interested in. Computers, pokemon, trains etc – after all most of these were invented by autistic people, so it makes sense? If we’re so capable why do we need the support I can feel you asking? That’s a good question – although autistic people are excellent at many things, communicating is not one them. Finding friends is hard, especially in school when we spend most of our time trying to learn though being in pain and being bullied. I don’t know the exact figures but because of our social difficulties, autistic people not only die earlier we also have much greater incidence of drink and drug abuse. This is to cover up the intense loneliness many of us feel – and again a social groups gives our children the opportunity to practice their skills in a non-judgemental, supportive environment. They can take these skills forward as well as having their self esteem improved too. Because I am “out” to my son in terms of talking about my own autism, he only has to ask me about x, y or z odd experience and I can instantly reassure him that that is normal for us. For example, he really suffers if children in his class misbehave and I was able to explain that as autistic people we are rule followers, and that rules help us feel safe. But what I’m hoping is that in the long term although he may still feel different, he will know that is ok and that he is ok and worthwhile. Most of us autistic parents have NEVER knowingly met an autistic person until the day our child is diagnosed. Imagine how terrifying it is to be told your child won’t develop empathy (untrue!) or have relationships or a job (all untrue by the way) – how does that make you feel? With this group I hope to support the parents too by letting them talk to an actual autistic person and seeing that we are happy and fulfilled in our way. That we can have relationships and good lives and be content – all the things any parent wants for their child. As a quick aside the quickest growing population of individuals going for diagnosis is autistic mum’s and this group can support those too.
Finally, back to my daughter. The range of options for children with her range of needs is so limited. In this group I hope to support all sectors of the community be providing activities for all – so games and lego for the more accomplished, sensory activities for all, soft play and a bouncy castle (perfect for those with adhd added in), train and other toys for all regardless of age appropriateness, and a bit of support and love for all. Please help me make this come true!