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monicah

Quick Hello and straight to the subject

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Quick introduction - I'm Monica, mum to Ada, 6yo.

Neither of us is diagnosed with Asperger but we both could be, probably. I'm on this forum in search of answers to what is best for my daughter.

To cut a long story short, the school is pushing for a referral to a psychologist and a diagnosis of Asperger for my 6yo daughter. They base their recommendation on a combination of characteristics - my daughter is rather advanced academically, she is an oddball, she is emotionally sensitive and a bit on the anxious side, she is a bit of a pain to a teacher as she is perfectionist, competitive , demanding and tireless, requiring lots of activity and attention, without which she can be either irritating or overemotional.

I know my daughter very well and after reading quite a bit of reading I concluded two things

- Based on others Asperger diagnosed traits, it is possible that a diagnosis of mild Aspg could be made for Ada.

- There's nothing wrong with Asperger people except that the normal folk don't get them and find them odd (with all the attached social implications).

The school is presenting a possible diagnosis as a wonderful opportunity for my child to get all the help and attention she deserves. I'm not buying it, judging by the 'help' already given it is just an opportunity for them to do away with all the hard work she requires by having a couple of 'support' sessions every week. However, I'm trying to keep an open mind - a proper psychologist might be a different thing altogether.

I would really appreciate some views on if and how a diagnosis has been of benefit to you or your child.

Ada is only 6 so she doesn't yet feel like a freak. She might get there later but at the moment I fear that an official diagnosis will change people's attitude towards her and she will be made to feel like one.

Thanks in advance to those who do respond

 

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As someone who is on the waiting list for a diagnosis, that will happen close to my 60th birthday, I wish I'd known decades ago. I suspect I have fairly mild Aspergers, enough that no one appears to have noticed or made any kind of suggestion that there might be something wrong for almost all of my life, but enough to cause me problems that I may have been better able to cope with if I'd known. Of course when I was 6, no one knew anything about all this stuff anyway, so it wouldn't have happened then unless my symptoms were extreme, and I would have probably got totally unsuitable and harmful "treatment".

 

My concern is what happens if I'm told it's not Aspergers/ASD. My experience of the health service is that they can't cope with looking at a problem and finding the cause and a solution, but they pick up on one possible cause, find out if you've got it, and if you haven't, they discharge you, and you have to start all over again. They don't seem to grasp the idea of saying "no it's not that, so let's find out what it is".

 

But right now, I want to know if there is something wrong/different, and what it is, so I can do my best to deal with it. If I'd known when I was young, I might have been able to do things differently.

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Traveller, thanks for your answer, this blog is a very good place to find some honest answers.

I've seen a few posts by now in which people express relief at having a diagnosis and I would be curious to find out if people actually find the support they need from the outside. At the moment I'm really concerned about allowing my daughter to be assessed because of the way the school overreacted and exacerbated her peculiarities to the point where I can say the portrait they created of her is plain ridiculous. I'm concerned by this overreaction and I wonder how much risk comes with an official diagnosis and how does it weigh against the possible benefits.

There might come a point when she will feel the same way as you do but would a privately test not be wiser?

I think my daughter is clever, funny and interesting, I could not wish for a better child. She is odd at times and hard work at times but the good bits are soooo good, they are so worth the package. I really don't understand why they can't just accept that she's a bit different, that as long as she doesn't bother someone else and as long as she's feeling fine about herself she doesn't need "help".

Traveller, if you could change yourself into a 'normal' would you do it?

Edited by monicah

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Traveller, if you could change yourself into a 'normal' would you do it?

From seeing an organisation I've just got involved in, definitely not! I'm possibly the one with a communication problem, and because of that I'm learning the importance of communication, and how to do it properly. The supposedly NT people involved don't seem to have a clue about the importance of effective communication, and how disfunctional the organisation is!

 

Not having had any children, I'm only aware of the current education system from bits I read about it, so can't comment on how best to handle your current situation. I get the impression the system is pretty unenlightened, and doesn't like nonconformity though. I think my potential Aspergers is mild enough not to have caused me actual problems at school. I just missed out on a lot of things I wasn't aware of, or didn't know how to handle.

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You make some good points, Monicah... and you give some good advice, Confused. I agree with you completely.

 

I was a 'gifted' child and have suffered all my life due to a lack of autism diagnosis - which at last, I now have. Not having an early diagnosis is my biggest regret. My life would have been so much easier with appropriate support and understanding. To me, understanding is just as important as support, for it gives us legal protection against exploitation and discrimination - at least in theory. It's up to us all to ensure that this happens in practice by raising awareness of our condition.

Is Ada happy at school? You say that she is rather advanced academically. By this I suspect she could well be a gifted child - and crucially, this is not merely the same as having a high IQ. I'll go as far as to say that all gifted children are on on the spectrum, however, many remain undiagnosed (especially girls) due the fact that their very 'giftedness' detracts from, and disguises, the AS. As we grow up we are good at copying others and can generally 'pass' as neurotypical, but this does not mean that we don't all have our particular AS-related vulnerabilities (mine are executive dysfunction, sensory processing sensitivities, extreme emotional sensitivity and proneness to panic attacks). Life won't be easy for her, especially when she reaches adolescence and adulthood; unless she has a diagnosis. (I've known many gifted children due to my early involvement with the home education movement).

 

I have a close friend, a 12-year old child, who was officially recognised as being 'gifted' at quite an early age. Her life is far from easy, and due to her difficulties in dealing with the NT world, she suspected that she had Asperger's, read up on it and insisted she got a referral for diagnosis. She has an appointment with the autism team later this month. Having discussed our traits, I'm 100% convinced that she is on the spectrum; we share so many key traits in common. She reminds me of myself at her age. Meeting her has led me to research into the nature of 'giftedness' in children and its very close links with HF autism. It also explains why I am the person I am today. Of course, without knowing more, I may be wrong in assuming that Ada is a gifted child.

...the school overreacted and exacerbated her peculiarities to the point where I can say the portrait they created of her is plain ridiculous. I'm concerned by this overreaction and I wonder how much risk comes with an official diagnosis and how does it weigh against the possible benefits.

 

In my opinion, a diagnosis overrides any risk, if only because it can be used against them. I've learnt to be very wary of schools - and 'the system' in general, for it's largely run by NT's for NT's and embodies many undesirable NT traits - such as dishonesty, hypocrisy, power, etc. To them, it's all about fitting us into neat little boxes, a belief that never properly succeeds, for we are all individuals - and Aspies (especially the gifted-female variety) are a lot more individual than neurotypical people, Schools do tend to overreact, and especially at primary level. They get things wrong far too often, simply due to lack of autism awareness training - and often lack of awareness of giftedness in a child - for gifted children are quite rare. Many such children find that school holds them back intellectually and causes them stress (mainly socially) and parents may opt to home educate them. They teach ourselves far more effectively than being taught by teachers. All they need is a little guidance.

As you probably know, autism is often inherited. If you suspect you're on the spectrum - as I did, after doing the usual online tests, etc. then you probably are, and I advise you seek a diagnosis too, if only to confirm your suspicions and give peace of mind. If you need support in any area of life (say, by your parents - as I did), a diagnosis could be very useful at any time in the future.

If you have any more questions or worries, please let us know. As 'experts through experience' we're here to help.
:)

Edited by Mihaela

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You make some good points, Monicah... and you give some good advice, Confused. I agree with you completely.

 

Thanks for that useful bit of feedback Mihaela. I'm wary of saying too much, as it might turn out I haven't got it at all, and I might be misleading people. So far, the only person I've talked to who I know has Aspergers reckons I have it too, so bits of reassurance that I'm on the right track are really helpful.

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Dear Monicah,

Diagnosis has been of immense benefit to me - but this happened at the age of 58 years old. I know little of the benefits or pitfalls of diagnosis at a younger age.

 

For what I know, which admittedly isn't much, it takes at least two experts in the field to diagnose ASD, and diagnosis is tricky.

 

Dear Confused Traveller,

I went into the diagnosis confused, upset, paranoid that I was actually suffering from a mental illness and in my own opinion at the time, I completely bombed the diagnosis by being the most resistant pathetic dork you could imagine. After a christmas as an isolated gibbering wreck thinking that the doctor was going to dismiss me as a waste of space and time, it turns out I have ASD.

 

I've yet to find even the slightest encouragement from officialdom for adults with ASD, let alone support.

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Hi again and thank you for your replies

 

It has been a very stressful week - we had a school meeting with several people, including the head teacher. The outcome was in our favour with the inclusion manager dropping her demands for assessment very quickly, before the head teacher even made it to the room. Why do I consider this a positive thing? A few reasons: first of all the school based their whole case on personal impressions and had very few facts to present that could justify their description of my daughter's behaviour. Having used clinical terms and having exaggerated them for the sake of making their point they left us little choice but to refuse them - an assessment made taking their views as into account would have been plain wrong.

 

Mihaela, I do believe my daughter has most of the characteristics of a gifted child and we actually requested that the school consider this as a possibility before recommending an assessment, we even provided them a study about misdiagnosis of gifted children. We were refused but I don't want to go into details because fear I'll turn this post into a rant. I know what you mean by "not merely the same as having a high IQ" , there's a spark, the kid who thinks outside the box and makes valid but unusual connections. I'm not sure where gifted ends and Asperger starts but there seem they do seem to have quite a few traits in common.

 

In my opinion, a diagnosis overrides any risk, if only because it can be used against them...

 

If I hang around I might learn more about how I could use a diagnosis for my daughter's benefit, unfortunately so far they seem to have the upper hand. We had a lot of stress and frustration because when we did not agree with all the school's proposals for my daughter (in particular we did not agree with an assessment based on their impressions and we asked for further observation in which concerning behaviour is objectively recorded including what, how often, and if it relates to a particular person or situation, also we did not want the one to one social integration sessions but proposed that they are done as part of the class since we did not see how pulling out a child from the society can help them learn how to be more sociable) they wrote back accusing us that we do not care for our daughter's emotional wellbeing.

 

To them, it's all about fitting us into neat little boxes, a belief that never properly succeeds

 

For my daughter this is exactly what I worry about, that they'll fit her into the Asperger box so her unusual opinions, her worries and her unusual but valid contributions (she always tries to change things her way and often has very complex ideas about how things, mostly games, should really be like) will not be considered because she'll be just an Aspie. At the moment she is too young to understand a diagnosis but has already started to notice she's a bit different.

 

If you suspect you're on the spectrum - as I did, after doing the usual online tests, etc. then you probably are, and I advise you seek a diagnosis too, if only to confirm your suspicions and give peace of mind.

 

Mihaela, I fear it is a bit late in the day for me, I've given up on the others a few years back and I'm well past caring what they think of me. I can function fairly well in the society if I find appropriate motivation, which I don't often do. I'm aware of the unsettling effect I have on a lot of normal people and I like popping into their midst every now and then to see how quickly they get flustered and awkward, it's my little revenge and I think it's only fair since they too make me uncomfortable most of the time. I'm not being mean by the way, all I have to do is try to have a perfectly normal meaningless conversation.

 

Alexander, I really feel for you and have to express my outrage at the "experts" that can diagnose but do not help further? Did they at least provide you with some information regarding possible support / treatment if any?

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Second meeting with the Psychiatrist in May when I expect to be told that there isn't any support - perhaps there will be? ASD isn't treatable, our local dx team offer diagnosis only, and I consider myself fortunate to have got this far.

 

I do not want a social worker / care worker, am High Functioning so things not so bad.

Edited by Alexanderplatz

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Alex P. Latz and MonicaH, I have quite a lot say (as usual!) but haven't the time to say it right now.

Just letting you know that I'm not ignoring you and I'll reply soon. Most of what you both say sounds very familiar to me, and I'm as annoyed and frustrated as you are about the way we are treated. Something needs to be done about it.

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Welcome to the forum, i hope your daughter get the support and diagnosis asap. i appeared not to need help when i was much younger but wasnt diagnosed until i was 16.

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