Really Weird thing at ASC assessment - views please

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whirlingmind
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28 Mar 2013, 8:06 pm

My eldest daughter (11yo) had her ASC assessment at CAMHS this week (NHS, UK). They know she is resistant to having AS, and they said to her (with me there, so addressing this to me too):

"People with Asperger's can improve and lose their diagnosis, we are more than happy to re-assess you in a year's time if you are diagnosed this time." It was a child psychiatrist that said this.

I replied to this, that Asperger's is a different wiring of the brain, and it is a lifelong condition, that I didn't agree that someone could outgrow it, but that it depends on your environment and situation as to how you are coping with it.

As someone else said elsewhere on WP, just because a diabetic's condition is being managed with insulin doesn't mean they don't have diabetes.

I am quite upset that they said this to us, I have AS myself and I also said to them that my traits are worse in some ways now than when I was a child. I don't want them giving her false hope and I am more than a little suspicious of them saying this.

My daughter is severely unempathetic and unsympathetic, this is deeply ingrained in her. She has severe OCD, she has always had issues getting and keeping friends and her perception of what constitutes a friend is highly immature (e.g. she classed a girl she met once only as a "good friend" when asked - perhaps she was taking it literally, that 'good' meant nice, not a close friend) and loads of AS traits. Even with interventions...which I know they will not give her because this is the cash-strapped NHS we are talking about and I have been banging my head against a brick wall to get the right support for my youngest HFA daughter, I cannot see how she would 'lose' her diagnosis. That's if they even do diagnose her (we'll find out on 2nd April) because I am 100% sure she has it, but I have no faith in the NHS for a few reasons, and a phone call I had today made me doubt that they are intending on diagnosing her.

Has this been said to anyone else at their child's assessment, about losing their diagnosis a year later, or somewhere down the line?


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momsparky
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29 Mar 2013, 5:01 pm

How frustrating! More so that we in the US envy your healthcare system - but I suppose everything has its drawbacks.

We haven't run into that - but there is a commonly-held belief here (that most people don't voice out loud) that autism is an excuse for bad parenting, and kids will "get better" if they are "held accountable."



Bombaloo
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29 Mar 2013, 5:20 pm

My observation so far has been that the people doing therapy with our kiddos seem to need validation that their efforts are fruitful. In the case of autistic kids the trend seems to be that they find this validation by saying the kid's behavior (because non-typical or problem behavior is the measure of the existence of autism at this point) has improved as a result of the therapy. That's what we want, right? And sometimes they even say that the behavior has improved so much so that the child's behavior no longer meets the DSM criteria for ASD. I think the fallacy in this method of measurement is that the challenges our kids face are constantly increasing and changing so you may have a 7 yo who has been doing tons of early intervention and who can now function as well as most of his peers in the 1st grade classroom. I say GREAT! But what happens in 2nd grade when the academic and behavioral expectations/challenges increase. That kid is still autistic, even if he could hold his own against the DSM criteria for a period of time. He is likely to continue to need support and services as he advances through grade school and on into middle and high school and he is very likely to need services when it is time to transition to adulthood. I think it is problematic that the goal of therapy seems to be that at some random point in time, the measurement on the scale says behavior=normal and when that point is reached then the person is somehow not autistic anymore. Just ask Temple Grandin. She is a very successful person but she will ALWAYS be autistic no matter how well she learns to navigate the NT world.



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29 Mar 2013, 6:52 pm

I think he was trying to give your daughter something to hang onto, in case she ends up feeling strongly that her diagnosis is wrong. And, well, if she feels that it is wrong, she should be allowed to challenge it. I don't think the underlying concept is that people stop being ASD, but that since ASD is diagnosed by external characteristics, it is possible to develop into a place where you are no longer eligible for diagnosis. Totally splitting hairs, of course, but maybe he thought that was the split your daughter needed to be able to handle things.

I think your daughter may need to feel, more than anything, that she doesn't need to have this lable following her around for her entire life. Many teens get that type of concern. And if they want to "improve" enough to trick a tester, I feel that maybe it should be their choice. At some point, she has to be allowed to take control of her own destiny, as v. being tied to what you have set for her.

When my son began assessment, I was talking on an ASD board with a teen who was desparate to have her diagnosis removed. Personally, I was sure she was ASD, but I could feel how badly she needed to feel in control of her destiny. Knowing how that teen felt affected how far I went in the diagnosis process with my son. Once I had the school use diagnosis, I stopped; I was going to get for my child what he needed, and I figured we could decide at a later date if he wanted to pursue a medical diagnosis. I've never regretted that: he is uniquely in control of his own destiny as he gets closer to 18. Odds are good he will pursue a medical diagnosis in the next few years, but the difference is that it will have been his choice, not mine.

If you get a chance, maybe you could ask the tester why he said that to your daughter. You may find that he was trying to do nothing more than give her the sense that she has some control, some say. She is at the age she needs that.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


whirlingmind
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29 Mar 2013, 7:40 pm

But that is, like I say, false hope. I know this, living as someone with AS myself. You just cannot change the wiring of the brain. And if a reassessment would be just to say "OK, well now you don't get to keep your diagnosis" then it's pointless, because in her mind that would be equal to telling her she doesn't have it - when she does - irrespective of what the diagnostic testing says.

As a child, and particularly as a child with the issues she has (she is emotionally very immature) this is cruel and misleading her. She absolutely doesn't want to go through a reassessment anyway.

My daughter made me promise that if she gets a diagnosis, I won't tell anyone, which I agreed to. So she knows she doesn't have to worry about people finding out. CAMHS would notify the SEN social worker automatically, and I can't do anything about that.

I know she will need support in the future, and this is the only way to ensure she gets the support and it's the right type.

The psychiatrist addressed the comment to me just as much as to my daughter, it wasn't just for reassurance for my daughter.


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whirlingmind
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29 Mar 2013, 7:42 pm

Bombaloo wrote:
My observation so far has been that the people doing therapy with our kiddos seem to need validation that their efforts are fruitful. In the case of autistic kids the trend seems to be that they find this validation by saying the kid's behavior (because non-typical or problem behavior is the measure of the existence of autism at this point) has improved as a result of the therapy. That's what we want, right? And sometimes they even say that the behavior has improved so much so that the child's behavior no longer meets the DSM criteria for ASD. I think the fallacy in this method of measurement is that the challenges our kids face are constantly increasing and changing so you may have a 7 yo who has been doing tons of early intervention and who can now function as well as most of his peers in the 1st grade classroom. I say GREAT! But what happens in 2nd grade when the academic and behavioral expectations/challenges increase. That kid is still autistic, even if he could hold his own against the DSM criteria for a period of time. He is likely to continue to need support and services as he advances through grade school and on into middle and high school and he is very likely to need services when it is time to transition to adulthood. I think it is problematic that the goal of therapy seems to be that at some random point in time, the measurement on the scale says behavior=normal and when that point is reached then the person is somehow not autistic anymore. Just ask Temple Grandin. She is a very successful person but she will ALWAYS be autistic no matter how well she learns to navigate the NT world.


I think you might be right, it's validation for them more than anything. But there is virtually no support on the NHS by way of interventions and social skills training etc. It's all inclusion in the schools and they throw autistic children in often without support. She's home-edded at the moment, but she might go back to school down the line, it makes me worry for her.


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ConfusedNewb
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30 Mar 2013, 6:09 am

Thats an odd and frankly unhelpful way of putting it! I wonder if they meant that a person can slide up the spectrum to a point where a diagnosis would not be made? Ive heard of people being diagnosed with Autism then as they manage it and grow older it becomes a diagnosis of Aspergers, but I dont know if thats as much to do with different Drs opinions as some one "outgrowing" it.



Chloe33
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30 Mar 2013, 3:49 pm

whirlingmind wrote:
But that is, like I say, false hope. I know this, living as someone with AS myself. You just cannot change the wiring of the brain. And if a reassessment would be just to say "OK, well now you don't get to keep your diagnosis" then it's pointless, because in her mind that would be equal to telling her she doesn't have it - when she does - irrespective of what the diagnostic testing says.

As a child, and particularly as a child with the issues she has (she is emotionally very immature) this is cruel and misleading her. She absolutely doesn't want to go through a reassessment anyway.

My daughter made me promise that if she gets a diagnosis, I won't tell anyone, which I agreed to. So she knows she doesn't have to worry about people finding out. CAMHS would notify the SEN social worker automatically, and I can't do anything about that.

I know she will need support in the future, and this is the only way to ensure she gets the support and it's the right type.

The psychiatrist addressed the comment to me just as much as to my daughter, it wasn't just for reassurance for my daughter.


Whirlingmind, i agree with you, i am 33 years old and i still am the same me i was when i was 3 or 4. Wiring of the brain stays the same unless a seizure or something else might interfere.

I feel bad for your daughter that she feels she has to hide her diagnosis. She is lucky to have a mother who understands so well, though!

False hope is bad, maybe they just mean that people can adjust or get used to things or use various behavioral modification therapies and all that jazz.

Theraputic horse back riding was great for me.
Yet nothing has helped with my ASD issues.

Then there are stories of various spots on the spectrum Autistic children who don't talk and then start to communicate via typing computers, or ipads, so i wonder if the doctors get confused on different prognosis' and everyone being different..



cubedemon6073
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30 Mar 2013, 4:36 pm

whirlingmind wrote:
My eldest daughter (11yo) had her ASC assessment at CAMHS this week (NHS, UK). They know she is resistant to having AS, and they said to her (with me there, so addressing this to me too):

"People with Asperger's can improve and lose their diagnosis, we are more than happy to re-assess you in a year's time if you are diagnosed this time." It was a child psychiatrist that said this.

I replied to this, that Asperger's is a different wiring of the brain, and it is a lifelong condition, that I didn't agree that someone could outgrow it, but that it depends on your environment and situation as to how you are coping with it.

As someone else said elsewhere on WP, just because a diabetic's condition is being managed with insulin doesn't mean they don't have diabetes.

I am quite upset that they said this to us, I have AS myself and I also said to them that my traits are worse in some ways now than when I was a child. I don't want them giving her false hope and I am more than a little suspicious of them saying this.

My daughter is severely unempathetic and unsympathetic, this is deeply ingrained in her. She has severe OCD, she has always had issues getting and keeping friends and her perception of what constitutes a friend is highly immature (e.g. she classed a girl she met once only as a "good friend" when asked - perhaps she was taking it literally, that 'good' meant nice, not a close friend) and loads of AS traits. Even with interventions...which I know they will not give her because this is the cash-strapped NHS we are talking about and I have been banging my head against a brick wall to get the right support for my youngest HFA daughter, I cannot see how she would 'lose' her diagnosis. That's if they even do diagnose her (we'll find out on 2nd April) because I am 100% sure she has it, but I have no faith in the NHS for a few reasons, and a phone call I had today made me doubt that they are intending on diagnosing her.

Has this been said to anyone else at their child's assessment, about losing their diagnosis a year later, or somewhere down the line?


And we aspies have the problem??? What kind of idiotic, pseudoscientific nonsense are they spouting? How much acid are they dropping?



whirlingmind
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07 Apr 2013, 5:57 pm

...and this is what it says on the National Autistic Society's website:

http://www.autism.org.uk/news-and-event ... utism.aspx

Quote:
Autism is a developmental condition affecting the way the brain processes information. It occurs in varying levels of severity and is a lifelong condition; children with autism become adults with autism.


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DX AS & both daughters on the autistic spectrum