Real Life

Moving on from the judgemental: Listening to ASC families

Date: June 14, 2013 Author: admin Categories: Real Life 5

This is the 3rd (but hopefully not the last!) in this series of blog posts on Autism. The Daily Toddlers guest blogger Shifting.Ground discusses judgement of ASC families and how public opinion needs to move on.

“Autism doesn’t affect a person physically in the way that cerebral palsy does for example, and because of its ‘invisible’ nature – autistic spectrum children look ‘normal’ – parents of autistic spectrum children are often viewed as incapable of controlling their ‘naughty’ child”.

Part 3

The National Autistic Society

great expectations drawingI appreciate it’s not an easy thing to understand, for ten years we didn’t ‘get it’ either. When our son was diagnosed with Aspergers it didn’t change anything other than we started to understand what we were dealing with. A few years on and he’s so well adjusted to life I only notice the traits when he finds himself in unexpected situations, his mostly military precision life arranged and adjusted as he needs it to be. He’s a typical teenager to look at so you wouldn’t guess he finds some everyday things unusually hard, like controlling his anxiety at the slightest change of plan or calming his incredulity and anger when life doesn’t go exactly as it’s mapped out in his head. But now he has strategies, he has it under control, he’s learned how to cope. These days his ASC is very much in the background.

Labels give us something to go on but it’s true they aren’t that helpful. They don’t tell us anything about a person other than the assumptions we already harbour about conditions we may have heard of but don’t know much about but they occasionally give parents some release from being the object of other peoples’ judgement – and giving it a name gives parents somewhere to start digging.

Ours is a journey from expecting a child to do things in a typical way and getting someone who sees life differently.  Once we knew it was ASC we stopped shouting at the heavens ‘why can’t he do things in a normal way’, this before we realised there’s no such thing as normal, and started working out what we and he could do differently as clearly trying to shove a round peg into a square hole wasn’t working.

All parenting is hard and joyful in equal measure, having a child with a special need just adds another dimension. We’ve gone from exasperated intolerance of him to a critical querying about him to tentatively making adjustments for him and now setting expectations with him. We have nothing but praise for his determination to help himself and relief at the peace of mind he now enjoys, all mental health illness seeped away.

Awareness, understanding and support needs to be extended to all children who struggle not just the ones who pass a diagnostic criteria set too rigidly for many to qualify. Batting families away by implying the difficulties are to do with  parenting may be the cheap and convenient service replacement system but it doesn’t solve the difficulties it merely pushes them off to someone else’s budget somewhere in the future. If ASC families are left to go it alone, sink or swim, it leads to heartbreaking loss of potential for children and increased use of services and long term costs for taxpayers.

There are many changes coming with the new SEN legislation and children’s services are starting to listen to parents. The challenge will be securing a widespread step change so that neuro-diversity will be better understood all round with parents really being valued for the wonderful job we do bringing up our super children. When parents are supported we have the strength to keep fighting for the best outcomes for our children and when judged or blamed it drains that capacity. The sheer loneliness, isolation and fear that comes from being wrongly criticised as somehow the cause of a child’s difficulties is a toxin, a silent poison that seeps in and undermines relationships. Understanding, empathy and support go a long way when what you need is a cup of tea, a chat and a responsive service.

I add a conversation from a radio call show in 2010.

Desperate father fearing for his ASC adult son’s life. The show took up the case and contacted his MP. Later the speaker was invited back to the programme, reported his son’s needs had finally been diagnosed and was now receiving psychiatric help. Conversation as follows.

Son extremely ill, they fear for his life and are exhausted. Their son has ‘lost hope’ and is suicidal. That parents are making decisions when feel they are not in the right position to make them. They need help and time but staff are not trained to make the decisions they need. Dedicated six years of their lives trying to get people to take it seriously and give them some constructive help. None is evident.

Met with MP who took a non urgent call and excused them. They were still talking as they were shown the door. “If ever we felt insignificant it was that moment that confirmed it on our minds”.

Trying to get the one thing the son needs that he doesn’t get is time and trained  staff because what they have received up to now has been botched, second rate, a filler or the cheapest option. They have spent hundreds of hours making calls, writing letters. Been given explanations to try ’this or that’ but their life is one of total frustration day after day and still they can’t get anyone in authority to help. Had meetings with chief executives but no one will take the macro picture.

‘If you have a child in this position you have to walk stumbling and falling over trying to find what help you can because no one tells you what to do or what’s available’.

Initially they didn’t know much about autism but suspected he had it, they asked for autism to be assessed but the report came back as negative. ‘Had it been correct it would have saved six years of torture, the millions of arguments and rows we’ve had, the ruined holidays’.

They have been top to bottom. The GP told them they have managed to do more than any doctors have done for a person in this position and what ever they are doing to keep doing it. The GP wants to put the caller on Prozac but ‘I don’t want to do that as I need to keep sharp, focused and remain angry and keep on like a terrier at these people until they do something but unfortunately we are utterly and totally spent’.

They have ‘no confidence in the NHS’.

‘If anyone listening out there has a child on the Autistic Spectrum Condition they have my deepest, deepest sympathy and my God help them because no one else will. The NHS looks at the ‘smart price’ and ‘value brand’.  I don’t trust them because of our bitter experience’.

That many people mean well but don’t have the time or resources or their in- house system is too complicated and the left hand doesn’t know what the right is doing. That they have rattled many cages, banged drums and been a thorn in people’s flesh. The MP’s response was to tell them £70 million pounds has been put into this ‘which was a great consolation to my son banging the walls and crying in his room’.

That he felt he was playing a dangerous game, fearing that if they are too painful people would throw his case out all together. ‘Taking it to the limit is the only thing you can do and the only way you can do it is to be an awkward so and so and it shouldn’t have to be like this’.

Thankfully in 2013 parents are starting to feel they are being listened to.

Blog post by Shifting.Ground, July 2013

More Information:

Supporting families with children on the Autistic Spectrum

mASCot enables families to connect and meet others in the same situation as themselves. We are all families from Brighton and Hove and we all use the same schools and services. The support we get from each other has been a lifeline for some of our families and now mASCot has become the strong support network that we all needed but wasn’t available to us locally. The group is particularly keen to reach out to new families who are looking for support or advice but are unsure of where to go.

National Autistic Society
Helpline: Call 0808 800 4104

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