Has anyone ever been undiagnosed?

[purpleangel]

Hi, my son is 12 years old and was diagnosed with Aspergers at age 5 in berkshire. We have a statement giving him 15 hours of support, but since moving to North Yorks, we have hit one brick wall after another. He is really good at school as it is in the rules that he has to behave. When he gets home it is another story!!!! As a result of this though, very few people have really seen him 'lose it'.

 

Our latest set back is that his new psychiatrist has suggested undiagnosing him because he doesnt like the fact that he has Aspergers and has never really come to terms with it. Taking away the label wont make it go away. I am at a loss as to how to fight this - any suggestions?

[lisann]

Hi Werid one this one I personaly have near heard of un diagnosing a person/ child.After all label or no label they are still the same and if they have AS then they have it surely?

 

By saying that your son has no label and therefore saying he doesn't have AS would confuse him would it not?

 

I am assuming you have told him of his AS and therefore giving him some sort of understanding of why he does things/thinks differently.By saying no love you aren't actualy AS would give him a brain spin and confuse him.

 

Um not sure if I am making scence or if I read the post correctly so I'll shut up and wait for others to post.

 

 

Love Lisa x

[Flora]

purpleangel... I've heard of people having their dx changed to something else but never heard of anyone being 'undiagnosed'.

 

I'd be hugely against them doing this without a full clinical assesssment to clarify exactly what is going on with your son.

 

When William was diagnosed the consultant gave me the choice of either the label or a full profile of his difficutlies without the label. I thought that as it was likely that his profile would change over time then it would be easier to have the label. Maybe this is what your consultant is suggesting??

 

If your son DOES have AS then 'undiagnosing' him will not change this. The pyschiatrist should be cocentrating efforts on helping your son come to terms with who he is and to accept himself.

 

Also, children with AS are often very passive and follow the rules at school then all hell breaks loose when they get home, it's classic! I had this for months on end with my son who is also 12, (something to do with lack of support at school and adolesence kicking in I think). This has stopped now since he started taking melatonin and is even better now that he's out of school until September. I think I would have hammered anyone if they'd suggested we undiagnose him when we were going through the bad times.

 

Lauren

[justamom]

This is a weird one, never heard of it personally but talk about confussing. First he has AS then you move and he does not???? The only thing that has changed is the new phsyc's opinion. Alot of the parents of this forum have said that there children dont "present" at school, there was a thread passive at school/meltdowns at home its very interesting if you do a search you could find out more about the subject.

 

I have the same problem with my son who is 12, school say that he never displays any AS traits but if they look closer they would see them. He does however "pretend to be normal" (without offending anyone)and then like a coiled spring release all his pent up frustration at home. Nobody has really seen Keegan blow and they think that i am making it up but it happens...

 

He doesnt like the fact that he has Aspergers and has never really come to terms with it. Taking away the label wont make it go away. I am at a loss as to how to fight this - any suggestions?

 

My son does not really understand his dx yet either, i certainly am learning everyday so for the psychratist to say that is not really a reason to un dx him????? Surely there are other factors that contribute to his dx other than him not displaying any AS traits at school what about sensory factors,visual problems, social etc etc.....not just him behaving at school - do these professionals always expect misbehaviour.. sorry i am going off on one....

[col]

similar thing with DD7 and her AD/HD. Her LSA can't see it as she has read a book on it

The only thing i can think if is to keep a diary on him and how he is at home. IF he get's undx you may lose the support. Then your son may start to react like he does at home at school. And it may be harder getting the DX back. My views anyway so please everyone don't bite me feeling raw as it is tonight.

[purpleangel]

similar thing with DD7 and her AD/HD. Her LSA can't see it as she has read a book on it

The only thing i can think if is to keep a diary on him and how he is at home. IF he get's undx you may lose the support. Then your son may start to react like he does at home at school. And it may be harder getting the DX back. My views anyway so please everyone don't bite me feeling raw as it is tonight.

Thanks Col, I will try keeping a diary and see how we go. Hope you are not feeling as raw tomorrow. xx

[purpleangel]

This is a weird one, never heard of it personally but talk about confussing. First he has AS then you move and he does not???? The only thing that has changed is the new phsyc's opinion. Alot of the parents of this forum have said that there children dont "present" at school, there was a thread passive at school/meltdowns at home its very interesting if you do a search you could find out more about the subject.

 

I have the same problem with my son who is 12, school say that he never displays any AS traits but if they look closer they would see them. He does however "pretend to be normal" (without offending anyone)and then like a coiled spring release all his pent up frustration at home. Nobody has really seen Keegan blow and they think that i am making it up but it happens...

 

He doesnt like the fact that he has Aspergers and has never really come to terms with it. Taking away the label wont make it go away. I am at a loss as to how to fight this - any suggestions?

 

My son does not really understand his dx yet either, i certainly am learning everyday so for the psychratist to say that is not really a reason to un dx him????? Surely there are other factors that contribute to his dx other than him not displaying any AS traits at school what about sensory factors,visual problems, social etc etc.....not just him behaving at school - do these professionals always expect misbehaviour.. sorry i am going off on one....

 

This is my son aswell - absolutely brill at school and then collapses at home. Some days he is absolutely fine, others he is most definitely ASD. He has taken to seperating all of the food on his plate (nothing can touch), setting up routines for himself, and twirling his hair. We have never had this sort of behaviour before, so to me he is showing more signs of ASD than ever before.

[Kathryn]

If your son DOES have AS then 'undiagnosing' him will not change this. The pyschiatrist should be cocentrating efforts on helping your son come to terms with who he is and to accept himself.

 

I agree with Lauren here.

 

Just to illustrate how perceptions can change: since my daughter was diagnosed two years ago her attitude has swung several times between passionate acceptance of herself as autistic, to complete rejection, and various states in between, sometimes within the space of a few days. Before Easter she was declaring to her psychiatrist that she wasn't autistic any more, two weeks after that, she decided she definitely was autistic and proud of it and that's the situation right now.

 

She has insisted that her original dx of AS be changed to autism, and as far as I know this is now written into her notes although I'm not sure how we comply with her wishes to have the original dx erased - short of going through all the reports with a bottle of tippex!

 

I hope you find a way to resolve this one, purpleangel.

 

K x

[DaisyProudfoot]

Hi PurpleAngel. You can't change who he is by undiagnosing him. Martin's paedetrician wrote in his DLA application statement.

 

"Martin has Asperger Syndrome, he will not grow out of it and will always need more care and attention than a normal child of his age. He will always have Asperger Syndrome."

 

Martin has learned to accept the way he is following a long period of chats with a clinical psychologist (which he still attends). Would this approach be more useful to your son than an "undiagnosis"?

[LizK]

The only valid reason for undiagnosing a child is if the original diagnosis is wrong and they are not on the autistic spectrum. Sometimes attachment disorders or other conditions can present like ASD. However to 'undiagnose' a child with ASD in an effort to pretend he doesn't have AS when he will stilll have exactly the same needs seems completely bonkers.

 

Lx

[Lucas]

Some parents that are desperate to 'recover' their children do ask for a professional to take away their child's diagnosis once they reach a certain stage, they seem to think all this makes them no longer Autistic. Ron Kauffman who sells the Sonrise programme originally claimed to no longer be Autistic but no one can be really sure what he thinks now.

[littlenemo]

Masking the frustration at school and letting it out at home is, as others have said, a classic presentation. Com was like this until we explained to him that if things were upsetting him at school, then he needed to show it at school or they wouldn't be able to help him. within a few weeks he had turned around completely and was much better at home, while school began to desparately look for help.

 

Our latest set back is that his new psychiatrist has suggested undiagnosing him because he doesnt like the fact that he has Aspergers

If I'm reading this correctly and the psych wants to 'undiagnose' your son because your son doesn't like his diagnosis, this is not only incredibly unprofessional, but please could I have the name and address of the psych? I'd like to have a diagnosis of bird flu, then i'd be more famous than any Big Brother contstant or footballer!

[purpleangel]

Hi PurpleAngel. You can't change who he is by undiagnosing him. Martin's paedetrician wrote in his DLA application statement.

 

"Martin has Asperger Syndrome, he will not grow out of it and will always need more care and attention than a normal child of his age. He will always have Asperger Syndrome."

 

Martin has learned to accept the way he is following a long period of chats with a clinical psychologist (which he still attends). Would this approach be more useful to your son than an "undiagnosis"?

 

Thanks for that - it is good to know that I am not going mad. I thought that he was totally wrong, but you know what it is like.... these professionals hold so much power over our kids, and sometimes I feel as if i am banging my head against a brick wall just trying to get someone to take me seriously. I really wish that Chris would 'lose it' at school, so they can see what he can be like......

[purpleangel]

Masking the frustration at school and letting it out at home is, as others have said, a classic presentation. Com was like this until we explained to him that if things were upsetting him at school, then he needed to show it at school or they wouldn't be able to help him. within a few weeks he had turned around completely and was much better at home, while school began to desparately look for help.

If I'm reading this correctly and the psych wants to 'undiagnose' your son because your son doesn't like his diagnosis, this is not only incredibly unprofessional, but please could I have the name and address of the psych? I'd like to have a diagnosis of bird flu, then i'd be more famous than any Big Brother contstant or footballer!

 

Good idea - I might pinch it and use the money to pay for Chris to go to a great private school that I have found. However at ?40,000 a year, it is a long way out of my reach... well, i can dream....

[dooday24]

my son still hasnt been diagnosed they think he has autism but as thy hav no phsychiatrists in the area to asess him at the moment we are still waiting does anyone else hav the same probs or who had this prob please contact me