My family is unique. It is unique due to the fact my Dad, my younger brother and I all have a diagnosis of Autism Spectrum Disorder. This leaves just my Mum as the only neurotpical. Instead of using the term ‘ neurotypical’ we prefer to refer to Mum as our Muggle.
My Mum is the rock which holds our family foundations together. I believe the three of us wouldn’t be able to thrive in life as much as we do without her support and love. We are so grateful to have such a caring, intelligent and wonderful woman in our lives.
I am aware that a handful of my readers are parents of children with an ASD diagnosis. I thought it would be interesting for those of you that fall into this catergory, (and for those of you which don’t) if I were to ask my Mum a few questions about living with three ‘Aspies’ – you can read her responses below:
Before my diagnosis what did you know about Autism?
I knew a bit about Autism, probably more than most people do due to my line of work but, I didn’t know much about high functioning autism or Asperger’s Syndrome. If I’m honest, when I thought of people with Autism, I perhaps associated this with people who also had learning difficulties.
Now you know more about the Syndrome, do you think you would have spotted the traits in me earlier?
Now I have read about Aspergers, I definitely would have spotted the signs, there was so many things which, with hindsight, were a clear indication of you being on the spectrum. One example would be your difficulty adapting to change of any description, you were extraordinarily reluctant to wean, I breast fed you for 9 months due to this, even though I was worn out (as you didn’t sleep either) and I desperately wanted you to accept a bottle so your Dad could help. At 9 months you finally accepted a bottle but then, you wouldn’t part with this for years, you eventually moved on from formula to having Ribena in your bottle & I can remember bringing your bottle of Ribena to meet you from school, it was a comfort for you, I could see this but, it was also something of a secret; given to you away from the school gates as I felt pressured, you shouldn’t still be having it and other parents could be judgemental saying, ‘I wouldn’t allow that, you should just let her cry, she’ll soon stop’. They had no understanding of how upset you would become or the extent of your anxiety. I knew instinctively, it was right to carry on with the bottle, I knew we’d work it out in the end and sure enough, the bottle eventually stopped but, the Ribena remains a firm fixture to this day, (you drink little else). There are many, many examples which would take weeks to list but, lots of very obvious things looking back like your not being able to cope with certain clothing, textures and sunlight, not responding to people engaging with you, not laughing at jokes or being able to role play etc.
How do you think your life differs to parents of neurotypical children?
It’s the subtle every day things which I imagine are different, I don’t have neurotypical children and so, honestly I don’t really know but, I think we probably work harder in terms of ‘keeping things on an even keel’ so to speak. For me, it’s the little things I do each day which perhaps, parents of neurotypical children don’t have to consider, for example, trying not to hoover when your brother is around, planning meals for each individual rather than 1 meal for the whole family, making sure everyone has their own specific shampoo available (all different) or their favourite drink or sauce; thinking about what I say so, if I say, ‘we’re leaving in a minute’ we are actually leaving in 1 minute and not ten.
It’s hard to put into words and difficult to explain to other parents, in the past, when I’ve said, I make 3 different meals, people comment that I’m a walkover, that they wouldn’t stand for it – I gather they perhaps think you are spoilt, this is absolutely wrong and I find it upsetting, you are far from spoilt. My family are amazingly strong and resilient people. I see your daily struggles and so, I want home to be a sanctuary, somewhere where we can all relax and be ourselves and do our own thing and if that means doing things a bit differently, so be it. I try not to question it, we just get on with it, it’s who we are.
Living with a whole family of ‘Aspies’ do you sometimes find it overwhelming? How did it affect the dynamics of our family following each diagnosis?
Yes, at times it can be overwhelming but, I think this only happens when I’m feeling protective of you. I want you to be happy and I want to keep you safe and over the years, we’ve had some really difficult and dark times when I’ve felt I can’t help, I don’t know how to help or, I can’t keep you safe – I do get really anxious at these times but, I imagine that’s the same for any Mum. I think things were harder before the diagnosis as we kept running into difficulties and didn’t understand why. You had some really difficult times going through school, it was heartbreaking to see you struggling everyday, to see you so sad and utterly exhausted. This is how I know you’re not spoilt, I saw how strong you were, even when you had been crying all night, night after night, you got up the next morning and did it all again the next day, you are one of the bravest and most determined people I know and it makes me feel incredibly proud to see how far you have come. Getting the diagnosis was very empowering for our family, it helped us to understand why certain things were so difficult and provided us with a narrative, a way of explaining ourselves to others and it freed us up to ask for help. My only regret is that you weren’t diagnosed earlier.
Do you notice that there is a difference for how all of us experience our Autism, (boys vs girls, etc)?
That’s a really interesting question. You are all very different people and you have your own personalities, I notice some similar traits in all of you but, of course, you’re all related as well as having ASD.
I think you all have variations of similar difficulties and some difficulties which are very specific to you as individuals, for example, your brother really doesn’t like wearing socks and buying shoes which he finds comfortable can be quite an ordeal, your Dad’s socks have to be a specific material and he will generally, only wears skate shoes, you, having found a shoe you are happy with (Converse) will tend to buy these in lots of different colours and you like to have them all lined up neatly together and whilst you’ve never appeared to be quite so specific about socks (as your Dad and brother) you don’t cope well with tights or socks with sparkly bits (scratchy) – this is a variation of a sensory issue.
You are excellent at organisation, you write things down and know what you are doing each day, as a result, you are good at timekeeping whilst, your brother really struggles with this, organisation is something which is very, very difficult for him and his timekeeping is very poor. Your Dad is better than your brother at organisation but his time management is also poor. How much of this is a result of your personalities and how much is your ASD I don’t know. Your younger brother, is more comfortable socialising than I think you and Dad are. You are all very literal and you all struggle to recognise people if they’ve had a different haircut, you all have sensory issues and allergies. None of you are happy with bright lights and you all often pick up on sounds which I can’t hear – electrical frequencies for example. None of you sleep well but, yourself and your Dad seem to manage this, whilst your brother has exceptional problems related to his sleeping. Overall, I would say, you appear to work harder on what is expected of you, (if this makes sense) as a child you definitely observed and mimicked the other children, something your brother didn’t do. I have a video recording of you and your cousin when you were younger and he’s in a terrible mood and you are happy but, you watch him, then you copy him – you are still happy but, you mimic his body language, quite accurately, it’s interesting to see you doing this, you don’t engage with him, you just watch and copy – I have since read autistic girls have a tenancy to do this and you definitely did.
Do you feel pressure and responsibility to help us learn to be ‘socially acceptable’? Have you had any help with this?
In my case, probably no more than any other Mum. I hope to have taught you your manners, to be polite, kind and considerate. I am very, very proud of who you have become, you are amazing, talented and kind people, so, no, personally, I don’t feel any pressure for you to be anything other than the wonderful people you are. Having said that, I think you work very hard each day ‘fitting in’ which is perhaps where things go wrong for you, if you felt more able to be yourselves, perhaps you wouldn’t get so exhausted and suffer so much. If people were more educated about ASD perhaps they wouldn’t be so quick to judge. I get so cross when I hear people say things like, ‘look at him, wouldn’t you think at his age he’d have learnt to use a knife and fork’ (as I did recently). What does it matter? There are far worse things happening in the world than someone finding it difficult to use cutlery. We should embrace difference, it’s what makes us unique. Unless someone is actually harming, offending or threatening you, what does it matter if they do things in a different way?
In terms of help, there has been none available following the diagnosis. I know I can contact the National Autistic Society if I have questions and I have read and continue to read as much as possible around the subject. It does worry me though, the lack of help and at times, I feel quite isolated. If I speak to other parents (of neurotypical children) they don’t really understand and unless we’re in a crisis situation, (which we have been before but obviously, we’d like to avoid) there is no one to turn to. Even in a crisis, for adults, there is no specialist support available for people with ASD, none that I’m aware of, it has to be a referral from the GP to the community mental health team whose services are quite broad and not specific to people with ASD. It is a concern because there is a real risk of people becoming very ill if they do not get the right help and support, particularly if they don’t have family or friends to help them.
Do you feel the government and public could do more to help those on the spectrum?
I think there could be more done in schools to educate children on disabilities generally, as we know, a lot of fear is bred of ignorance and also, for parents to think beyond that disruptive, awkward, sad or different child in the class, who is ‘slowing everyone down’ or ‘upsetting your child’ to think how wonderful it is, that your child has the chance to develop skills to support those less able or different to themselves, to include them, be kind to them and make them feel better, these are fabulous skills for children to learn. I think social media is a huge concern and the apparent rise in mental health problems among young people – issues which are way beyond what I feel qualified to comment on. But, perhaps, if we can all stop and think before we judge others and just be kind, it could make such a difference to someone’s life.
Anything else you wish to comment on?
Be kind to people with ASD, they make the world a more beautiful, interesting and inspiring0. place and in the end ……….it will be them saving the world!
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