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Does Autism "improve Over Time?"


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#1 Jolly Roger

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Posted 08 September 2013 - 02:53 PM

This is an interesting news report from The Scotsman:

INSURERS are refusing to pay out on a claim for life-long care of an autistic child because they believe the condition improves over time

There is this quote in it:

Robert MacBean, policy and campaigns officer for NAS Scotland, said: “While with the right support at the right time, people with autism can learn coping strategies to help them live with and manage their condition, it is a lifelong disability.


Obviously, their insurance is a legal contract and it all hinges on the wording in the contract and the clinical & legal terms used - but the principle is fascinating: does autism "improve over time?"

Of the hundreds of children and adults with autism I have known over the years, only a small handful have (to use the term written in their care plans and statements) "hit a plateau" and failed to improve - and I have known none who have regressed (although I have known quite a few who's behaviour has regressed, for a variety of reasons.)

But then what I do mean by improve? Certainly not that their autism has reduced or been cured - just that those people and their carers have developed routines and strategies that have made things easier and widened the scope of their lives and improved the quality of their lives. And those routines demand a high price in time, effort and sacrifice.

Gareth
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#2 Eggman

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Posted 08 September 2013 - 03:56 PM

LE has definately improved over time.

 

He was non-verbal up until around 5 years of age and a real handful.

 

I still have to pinch myself that he can talk. It was pretty much like a miracle when it happened as I was convinced he would never talk.

 

I've also had other parents tell me that they can't believe it's the same child.

 

It gives me hope that he can keep moving ahead (albeit at a slower pace I imagine) although I try not to have too many preconceptions either way of what the future holds.



#3 maximus prime

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Posted 08 September 2013 - 04:12 PM

Jack is undoubtedly easier now than he was when he was younger. I wouldn't say my workload is that much easier though just different. Back then it was constant fire fighting as Jack was a screaming ball of fury much of the time whereas now it's more ensuring the routines are running smoothly and trying to prevent any bumps in the road and Jack needs the emotional support now as well.

I'm also only too well aware how fragile the good spots are and how quickly everything can fall to pieces though so I seem to be constantly scanning the horizon rather than enjoying the here and now.

#4 Upsy Daisy

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Posted 08 September 2013 - 05:32 PM

I sometimes wonder if there is a 'delay' aspect to Autism which is separate from the 'disorder' IYSWIM.

I've watched both my girls make progress. Some can be put down to reduced anxiety levels and would turn into regression PDQ if certain demands were put back on them. I guess some people would still label that progress as an improvement but I wouldn't.

However, I've also seen some developmental stages happen which i thought were not going to. Puppy Girl at the age of 10 has cooperative imaginary play appropriate to a 6 year old but when she was 6 her imaginary play was completely solitary. IME that would be called a delay and she is making progress in this area that I would happily call an improvement.

However, I don't think that making that progress means that the basic difficulties she has as a result of her Autism are going to go away as she gets older. Her fundamental thought patterns, theory of mind, social communication skills, rigidity, anxiety, etc will always be there but will affect her in different ways as she gets older and is able to make more choices about the situations she puts herself in.

A child who can't cope with school may turn into and adult who can cope with work but only if that work is in an environment which presents fewer challenges than school did. If the challenges were the same the adult would make no apparent improvement. The Autism hasn't been cured in the adult who copes with work by any means.

  


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#5 Jolly Roger

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Posted 08 September 2013 - 06:54 PM

It was explained most clearly to me by a colleague at my last special school - her husband is blind.

After he lost his sight, he developed various strategies - like Braille and an improved touch memory - and managed to get a guide dog. Hs skills are so well developed now that he recently re-wired their Land Rover. I couldn't do that!

His sight hasn't recovered. He & his wife have developed strategies. That's what people with autism and their families do.
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#6 Mozzy

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Posted 08 September 2013 - 07:01 PM

I love this topic because I once (while giving Autism Awareness training with a colleague) got asked;

 

"When were you cured and how?"

 

After a split second of silence I said I was not cured, I would never be cured but thanks to interventions, therapies, technology and a massive amount of good people in my life I am able to do more things. I added that I will always need some level of support but I hope it can become less.

 

This person still looked a little puzzled so I continued to explain as best as I could by adding;

 

When I was 4 I could not speak. I had the same thoughts in my head as I do now, of course at a different level but I still felt feelings, had desires and wanted to get things I just had no way to voice them. Over time with PECS, makaton and speech therapy I learnt to use my voice, its still far from perfect, I stutter both when anxious and excited. It still feels like the wrong language to use - I am much more comfy signing but I can and do talk. This has led to a decrease, but not a stop to challenging behaviours because people listen now and do not assume or guess because we now talk the same language.

 

She stared looking like she was getting it but I really wanted to reinforce the fact Autism has no cure at present so I went on to add;

 

I get so frustrated when I cannot do as others do, just walk to the shop when I want even if that is 5am. I get frustrated my meals are things like sandwiches and cold options plated up for me as I cannot cook what I want and when I want but again with technology like microwave sauce pans I can now (just) do scrambled egg on my own.

 

My Autism is no less than it was when I was 4 or `14 or 24 and at 34 I will be just as Autistic as I am now but with technology and people listening to me, supporting me and pushing me to learn and develop skills or ways round problems I can always gain independence and of course with independence comes happiness and happiness alone means I am more comfy on earth, more relaxed and more able to cope.

 

It sunk in and she got it but it is one of those topics where how things are written can makes things appear different. An increase in skills or communication is not a decrease in Autism (in general).


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#7 Jolly Roger

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Posted 08 September 2013 - 07:08 PM

LOL @ Mozzy

My MIL still doesn't get that when LN started to speak, his autism became more obvious.

#8 Mozzy

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Posted 08 September 2013 - 07:24 PM

Oh god 

 

LOL @ Mozzy

My MIL still doesn't get that when LN started to speak, his autism became more obvious.

 

Oh yes too true. You can say all those literal things that go on in your head, you can argue logic and request the most bizzare things and cry when someone says "Im so hungry I could eat a horse" because that horse, the one you ride every week should NEVER be dinner, don't care if it tastes nice I dont want to have to ride another horse!


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#9 mad cat lady

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Posted 08 September 2013 - 08:48 PM

Slightly off topic but our medical insurance refused to cover any of J' s treatment for depression as they view autism as a chronic life condition and the depression he suffers is a condition linked to his autism so we are paying for his psychologist ourselves.
Surely the insurance companies can not have it both ways !!!!

#10 gingerpig

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Posted 08 September 2013 - 10:11 PM

It is classed as a developmental delay isn't it? So that implies that some progress must be made, although it should be noted it's impossible to say what it will be. It's like they've picked up the developmental delay bit and concluded that this means all the delay will be resolved which is not true.

#11 madferretlady

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Posted 09 September 2013 - 06:21 AM

here in NI there some families are being told that there children "no longer have autism" on being reassessed at 18 - for transition from child to adult services.

 

I suspect my son (now just turned 18) may be told this. He has aspergers and, over the years has learned to mimic the "normal" social behaviour of people around him very well indeed. He actually appears more sociable than his "normal" 19 year old brother (whose conversation is mainly made up of grunts), and I am constantly being told what a lovely well mannered young man he is. It is interesting that it is adults who say this - his own age group still can tell he is "different". 

 

But.... and it is a big but.... IT IS AN ACT. I am not saying he isn't a lovely young man - of course he is, but his interactions with people are the result of careful observation, mimicking and practice. He is still on the spectrum  -he admits that passing as normal is hard work and exhausting. When he is stressed or overwhelmed it all goes south.

 

He still has aspergers - he has just learned to mask it.



#12 Mozzy

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Posted 09 September 2013 - 08:23 AM

And that brings us on to the topic of masking.

 

Is masking Autism any different to taking daily medication to mask something like asthma?

 

Both are managed / masked and both still have the potential to cause major problems with little notice!


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#13 Upsy Daisy

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Posted 09 September 2013 - 08:43 AM

And that brings us on to the topic of masking.

 

Is masking Autism any different to taking daily medication to mask something like asthma?

 

Both are managed / masked and both still have the potential to cause major problems with little notice!

I don't think they are the same.

The asthma medication takes away the symptoms.

When Autism symptoms are masked there is a cost. Pony Girl has just started in MS sixth form and is masking her symptoms in order to fit it socially. When she gets home from school she falls asleep for two hours because she is exhausted. The symptoms are still having a major negative impact on her and having to sleep means she has less time than her peers for homework and leisure.

That's very different from being able to take medication to make the symptoms disappear.


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#14 Mozzy

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Posted 09 September 2013 - 08:53 AM

Upsy Daisy I'm glad you said that and how you worded it was spot on.

 

I love going out and doing things but the price of being as close to what society sees as normal is massive!

 

But I know some people (not on ASDF) would disagree with us so thought I would put it out there!


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#15 Upsy Daisy

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Posted 09 September 2013 - 10:32 AM

Upsy Daisy I'm glad you said that and how you worded it was spot on.

 

I love going out and doing things but the price of being as close to what society sees as normal is massive!

 

But I know some people (not on ASDF) would disagree with us so thought I would put it out there!

 

I find it sad that many professionals see masking as managing and use this as justification to withdraw support. I've had the discussion more times than I care to remember. They don't see the cost so find it easy to deny it.


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