Thursday, 27 July 2017

Parents with autistic kids need the right support

Our autistic son, at the playground

Becoming a parent can be easy for some, more difficult for others. Being a parent can be the same. Some take to it like a fish to water and for others it can be a daily struggle.  What must be really difficult is when your child’s autistic behaviour is misunderstood and as a result you are considered a bad parent.

Indeed, I'm saddened by the news that a BBC investigation has found that a lack of understanding about the way autism affects families has seen people inappropriately sent on parenting courses. Essentially these parents are 'blamed' for children with autism's behaviour.

It could be worse. In 1948, The Times Magazine ran an article suggesting that autistic behaviour in children was actually caused by their mothers. Many people with autism have difficulty engaging with the world, or at least appear to. This article suggested that these 'frosted children' became autistic because their 'refrigerator mothers' failed to bond with them. Autism itself was caused by poor parenting.

Had I been a mother then, I may have been blamed for Anthony's autism and his behaviour. Despite looking down on the face of my child and loving him, being prepared to do anything to help him and desperately following the advice of health professionals, I would have been the 'cold mother', the 'bad parent'.

Nearly 70 years later, although there is still some uncertainty as to the cause of autism, most evidence now points to it being a genetic condition. The very first thing said to me upon our eldest’s diagnosis was "It's nothing you did or didn't do.  This is not your fault."

However, this better understanding of autism’s potential cause has not necessarily gone hand-in-hand with an understanding about its impact.

Our eldest son, Anthony, had four visits to A&E and walk-in centers in the year before he started school with various ‘fall’ related injuries. He has two scars on his beautiful face, one from tripping and his cheek bone hitting the coffee table and the other from falling over the side of an armchair.  Did I feel like a bad parent? Yes.  Did I need parenting classes? No.

What I needed was the support (that I soon received) to help me understand that Anthony’s mind interpreted things differently.  He couldn’t ‘feel’ where his body was and would literally trip over his own feet or over balance without realising it.  With this information and some exercises we can help prevent some falls, and we’ve now cushioned the edges of most of the furniture in our home.

When our middle child, David, was five, he had a fairly unkempt appearance. He had gorgeous, but unevenly cut hair, ragged fingernails and his eyes had giant black dark circles that looked like he’d not been getting enough sleep.  Did I feel like a bad parent?  Well no, I felt exhausted.  Did I need parenting classes?  No, but a week of sleep would have worked.  Part of being autistic for David is difficulty in being touched and difficulty in sleeping. I understand this because I was given the right help and found the right information.

David would be awake for several hours in the middle of the night every night.  We’ve tried soo many things to help him sleep and had advice from professionals and sleep clinics.  He now sleeps a bit better, but not great.

We used to have to pin David down to have his nails cut and by the time he was five this was quite difficult.  He was also liable to scratching when he got scared, so, this meant sometimes it was easier to nibble David’s nails than to cut them This made them look a bit ragged.  Let’s not even talk about how frightening he found clippers and the noise or atmosphere of the hairdressers.  Which explains why I was cutting his hair at home and it looked messy.

In fact, I still cut his hair. Nowadays though, I’ve had some practice so it doesn’t look as ridiculous, though still adorably cute in my eyes.  Anthony was unable to go to the hairdressers when he was younger either.  But slowly, with support, we’ve developed an understanding of him, what he fears and now he can go and get his haircut with his father.

But what neither our little boy in A&E nor our shaggy haired child needed was for the affects of the autistic behaviour to be misunderstood and their parent to be given the wrong support. Despite the obvious waste of time, the real concern is that these parents are not actually getting the support they need.  And that goes for every parent whatever their needs or challenges.

What my kids needed, and other autistic kids need now, is an understanding of them and the right support for their parents. Because with this right support, Anthony barely ends up in A&E, his brother can have his nails cut and maybe, one day, both boys will be able to go to the hairdresser together.

13 comments:

  1. I totally agree with you. Initially i was told to go on a parenting course which i rejected and appealed CAMHS decision and asked to see another consultant who very quickly diagnosed Miss C with Autism. Miss M i am convinced has autism, we are on the waiting list to be seen but do you know what CAMHS told me when i was talking to them on the phone as i am struggling with my 6 year old. there is talk that within a few years from now autism will not be diagnosed. It will just be something we 'deal with' at home and at school. I really hope it is just talk! #Postsoftheheart

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  2. Brilliant Post, all too often parents of children like ours are still blamed rather than given the support they need to make a difference to their children. One day I hope very much that the culture will fully change. #PostsFromTheHeart

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  3. I think it's easy to blame parents for the behaviour of their children. I have four kids and I realsie that so many variables come into play when it comes to behaviour. In some ways I am fortunate in that my first born was really well behaved at school and that my son came along in second position. If he'd been first then maybe I would have been judged unfairly for his challenging behaviours when infact it was due to him processing things differently through having autism. Having said that the only support I was offered was a parenting skills course. I think any parent of any child would benefit from taking time to think consioucly about how to parent - to avoid getting stuck, to be come a parent who reflects on what works and what doesn't - for some that will be through quiet reflection by themselves, others will read, some will talk to a friend and some will find parenting courses very helpful - we are all different - one size and one approach options don't work for everyone. #spectrumsunday

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    1. That's really interesting Lynne. I've been on a few early bird courses - these are effectively a type of parenting course based around understanding the behaviour of our autistic children I guess. It was really helpful. It's not so much that parenting courses are being offered I think my concern is the wrong type of course being offered or offered for the wrong reasons. Thanks, as always, for your comments xx

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  4. For some, a parenting course might be a good thing - but really only if those delivering the course have an idea of the particular struggles which the individual children are facing. As a parent, there is not much worse than wasting time listening to someone telling you to do something which you know won't work. Especially if you are short of sleep! #SpectrumSunday

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  5. They can stick their parenting courses up their bums !!! #PostsFromTheHeart

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  6. What a well written post and isn't it awful that parenting classes still seem the go to response.

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  7. I had a lot of trouble with my sons behaviour last year. He has improved considerably but he is a challenge to say the least. I'm not saying he is autistic, but just that when I sought help I got none. I had his hearing tested, assessment for speech therapy which he is still doing, and wanted to discuss his behaviour with a doctor or someone! Most people/professionals I've seen have blamed speech on behaviour or vice versa, or said things like 'he's a boy' or 'he'll grow out of it', and yes they have suggested I go on a parenting course! I haven't, I am dealing with it as best I can, and I am glad to say his behaviour is improving. The school he starts in September is very supportive and I get on very well with his to be teacher, so I'm hoping we can work on it. Child behaviour, whether autistic or not I feel is not something that parents are well supported on at all. Thanks so much for linking up at #KCACOLS . Hope you come back again next time. x

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  8. Perfectly written, Parents with autistic kids need a lot of support that caters to their situation, thanks for sharing #KCACOLS

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  9. I completely agree. Parents need support and understanding to help them know how best to help their autistic children. Blaming them and sending then on parenting courses isn't always the best option #kcacols

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  10. I think for some, a parenting course is a good thing but I think its important to see the bigger picture before making judgement. At the end of the day, help and support is the most important thing #KCACOLS

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  11. Such a great post and so true, I think parents with any child with special needs should be given extra support if they need wish. It's sad that so many parents are left to struggle by themselves. #kcacols

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  12. Parents of autistic children need support and understanding and these truths need to be common knowledge for us all x

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