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New diagnosis (ASD)


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Hi everyone:), i am new to these forums so please bare with we, and feel free to ask any questions that you think might help.

 

My 8 year old daughter has recently been diagnosed on the ASD spectrum, we were told she either has asperger's or high functioning autism. My problem is i dissagree with the assesment report or at least elements in it, as there are parts that just dont add up to me and not reflect the child i know and interact with every day. I could talk about why all day long, and could lots of examples about what i mean, but i dont know exactly how this forum works and how much information i am supposed to give soi will just to give you a taster of what i mean with an example.

 

One of the elements of the report i dissagree with is that is says she avoids eye contact, doesnt display/read body language and uses exaggerated and direct facial expressions. But this really isnt the case, she has no problems with eye contact at all and never has done, she definately does display body language and can definatley read body language (or at the very least can read th body language of famly and friends close to her).

 

It has been a struggle to get her assessed, and to get the school to meet her statement which in all honesty they still havent met and we have had to fight for all the way. One such example is she has speach and language therapy allocted to her in her statement, but this was never met by the school, and in the end we had to pay a therapist privately to go into the school to work with her (something we couldnt really afford financialy, but at the same time couldnt afford to let her not reciveve any therapy at all). She has been previously diagnosed with speech and language problems, and had been assessed for ASD twice before (once 24 months ago, and again 12 months ago), both times we were told she was not on the spectrum and now 12 months later we are old she has severe ASD issues and wont be able to ever live an independant life, which to me seems a big leap, what do you think about this? any opinonis anyone can offer on this would be great.

 

I would really appreciate any advice about wheather can we get her re-assessed for ASD? Is it possilble? And if so how do we go about it? Any links, sites or literature etc that you can recomend would also be great.

 

Also she was assessed using the ADOS system, which as i understand it is language based, so i would also like to know if this is an appropiate assessment system for someone with speech and language issues. Can anyone offer any advice on this for me? Again any links, sites or literature that you can recommend would be great.

 

It would also be fanatstic if anyone could me some information on the various diagnosis systems, and which would be most appropiate in her case. Once again any links, sites or literature you can recommend would be great.

 

I think i should point out that i am not saying she is definately not on the spectrum, just that i believe she has been missdiagnosed and i want her to get the right diagnosis whatever it may be so that i can make sure she has the right amount of support.

 

Sorry for such the long post and thanks for reading it, but believe me i could have made this post 10 times longer;). All advice and information is welcome and will be very much appreciated.

 

Thanks

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Hi sparky, welcome to the forums :)

 

Firstly there are two points in your post, one you feel she has been mis-diagnosed on the spectrum. I'm assuming that you have received a written one confirming the various assessors involved are in agreement? If so then I think you will be able to ask for re-assessment. However this is something I am not familiar with but don't worry, someone - bookie in particular :) - will be along to help with this if you wish to go down this route.

 

I do think that although you know your child best without a doubt, sometimes our own view of our children can differ from how others see them regarding their difficulties, and don't forget ASD and Aspergers diagnoses can be very ambiguous, as although there is a set criteria, the difficulties can vary enormously.

 

One thing that is shocking is that you have a statement that is not being implemented by the school and you have had to pay someone for this? This is not on at all - your statement is a legally binding document and the school are breaking the law by not providing the help that your daughter requires. Have a look here

 

Independent Panel for Special Education Advice (IPSEA)

 

they will be able to help.

 

I hope this helps for starters - someone else I'm sure may be able to give a bit more in-depth advice soon.

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Well, Bookie's here and she's very confused, lol.

 

I'll be honest with you, this is a new one on me: Most parents struggle to get their children's needs recognised and helped, you seem to have the opposite.

 

I am going to ask a few questions, pls don't take it badly if you think I'm treating you like an idiot, I am not, but so many people get confused by the terminology and who does what that it is always worth starting from scratch. Ok, here goes:

 

1st of all, don't get hung up on the the Asperger's/HFA tag, they are interchangeable, some people prefer one, some the other but they mean the same thing and are clinically diagnosed the same way.

 

Right. You say your DD has a statement. Are you sure? You do mean a Statement of Special Educational Needs, written by your Local Authority, setting out precisely what your DD's SEN are? A legally binding document issued after they went through the Statutory Assessment multi-disciplinary procedure?

 

The reason I am querying this is that if your DD has SALT in her SoN, then it is paid for by the LA and the school are basically diverting funds legitimately allocated to her for other purposes... You can see how serious that would be and how to deal with it would be a different matter from SALT on an ad-hoc basis as defined in an IEP, for example.

 

Re: diagnosis. Who assessed her? CAHMS? How did it happen, why was she referred in the first place and by whom? Did you think there was something off, or was it the school that spotted odd behaviours?

 

One thing which intrigues me greatly is the way you disagree with the diagnosis, and forgive me for saying this, I don't mean this in a nasty way, but I do wonder you are not in denial over this. You wouldn't be the first and you wouldn't be the last either, believe me. You see, there are very specific ways in which ASDs are diagnosed and whilst it is possible to miss one condition on the spectrum if the other one is a big 'un (friend of mine, her son has been diagnosed ADHD for yrs and it is only recently they have also added the ASD tag, or we're looking at my Asperger's son and are starting to think he may have an element of Tourette's too), I can't think of anyone to be diagnosed with ASD and not actually have it. The fact the people who have seen her mentioned lack of eye contact etc and you disagree doesn't mean she's mis-diagnosed, it may be that she feels sufficiently safe at home that her symptoms diminish or are not noticeable, as well as you being used to them and therefore not noticing them so much. I have this at home, where my son is polite, articulate etc... but then he is in an environment where he feels completely non-threatened, where the structure is familiar, the noises non-aggressive etc... Outside, it's a different kettle of fish and he can go completely non-responsive or fly into a major meltdown just like that.

 

I have just finished a course on ASDs and one thing it did was focus for me the amounts of ways in which we as a family have adapted to his needs without even noticing so that his AS is virtually non-detectable to someone who would come to the house and not knowing him, would think him a perfect little boy.

 

Sorry, I do go on, but that's to try and make you take a good look and ask yourself: Have they made a mistake? Or is it maybe you can't or don't see her handicap? ;-)

 

Finally, it may well be that she wasn't that bad 1, 2 years ago, but that wouldn't be unusual either. The majority of AS get diagnosed by 6-7 yrs old, when the social inadequacies start mounting up and what could previously pass for a child with a slower rate of adaptation than the others then starts ringing alarm bells when the behaviours start deteriorating.

 

Give all this a thought or 10, let me know what you think. BTW, you can say as much or as little as you want, we won't judge you, if there's one thing an AS parent knows, it's not to judge, because let's face it, we've got enough of that going in the "normal"world. ;-)

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Wonderful post bookie :)

 

This might be a silly question but how do other members of the family that she has close contact with feel? The reason I ask is because well-meaning family can sometimes affect how we see things also. My partners family were adamant there was nothing wrong with my son when he was younger, saying things like 'oh he's just a bit behind, he'll catch up, and 'he'll talk when he's ready' etc. When we took him to their houses we were almost accused of being 'too over-protective' when it was patently obvious to me there was something wrong!

 

I'm not saying this is the same for you, but sometimes the opinions of those close to us can have an impact on how we see things.

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