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Why diagnose?
Or, alternatively, why not?


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#1 JaneDoe2010

Posted 09 June 2012 - 04:11 PM

If you had a child that could *possibly* have very mild Aspergers, what are the pro's and con's of diagnosis?

Why bother looking for a diagnosis when you're not after funding, and you can use the strategies and techniques just the same without the diagnosis?

What benefits might a child get from having a formal diagnosis as being *just* ASD? What might the negatives be?

Edited by JaneDoe2010, 09 June 2012 - 04:12 PM.


#2 ozbilby

Posted 09 June 2012 - 04:15 PM

The main thing is no diagnosis, no treatment. It is well documented that kids with ASD do much better when they receive early intervention.

Edited by ozbilby, 09 June 2012 - 04:16 PM.


#3 JaneDoe2010

Posted 09 June 2012 - 04:27 PM

Treatment would likely be simply using strategies and techniques at school and home, things that you can do with or without a formal diagnosis.

I suppose counselling may be available if there is a diagnosis? Then again, that can be offered free too through the GP.

Early intervention isn't possible, the child is in Grade 2. A girl - that's why we're so unsure about if it is or isn't ASD.

#4 hiddensecrets

Posted 09 June 2012 - 04:37 PM

Getting help from a psychologist.  Carer Allowance would also be a benefit (to help with treatment costs).  The school also told me if DS gets a diagnosis they would also be able to get help for him when otherwise they are not able to (e.g. he needs help with fine motor tasks but without a diagnosis they are struggling to get help).

#5 unicorn

Posted 09 June 2012 - 04:43 PM

I have spoken with a few parents who believe their child might have an ASD and refuse to get a diagnosis because in the event of the child wanting to join the armed forces, the child will be denied because they have a disability and yep when they start testing biological weapons on humans they are going to chose the people with disabilities first.

My son is fairly high functioning and unless you spent a good deal of time with him probably wouldn't pick up that he has any issues, but we have a diagnosis because although for the most part we manage fine, it allows some leniency for him, it allows him to have a pass card at school for the rare occasions that it gets too much for him and he needs to get away from the noise and chaos that happens in the class room. We don't medicate or go for treatments of any kind, but that option is there for us should I decide that would be the best thing to do.

#6 bark

Posted 09 June 2012 - 04:49 PM

OP sounds like your mind is made up against getting a dx but I imagine a dx will get yr DD some aide help at school.

#7 baddmammajamma

Posted 09 June 2012 - 04:51 PM

Benefits:

Off the top of my head, but I'm surely missing some things...

*  Getting all of the insights that come from a thorough assessment and being under the care of a great professional (Assuming you are going through the assessment process with a true pro who understands the nuances & complexities of ASD)

* Giving your child a better understanding of who she is (not that all Aspies are the same, but there are some common challenges and strengths that tend to cut across profiles). There are some AMAZING communities (on line/IRL) of people with ASD. I want my daughter to grow up being proud of who she is and know other young people who have similar profiles.

* Giving you a better understanding of your child. For some parents, this will mean giving them a kick in the pants to take action (let's face it, it's easy to hope that a child might just outgrow their issues if you don't know exactly what they are -- but when you are faced with the blazing letters of ASD, you can't deny that there's something going on)

* Helping people take your child's needs more seriously. This doesn't always happen, but it is often much easier to get schools to take notice when your child has an actual diagnosed issue rather than just the sense that they are "weird," "difficult," or "quirky." Things like getting an ILP, having special accommodations made for testing, etc. etc. can be helpful, if needed.

* Likewise, I find my friends and family to be much more patient and supportive of my daughter's needs -- and celebrate her victories and gifts -- because they understand that she has ASD. If she has a meltdown, for instance, they are likely to recognize that it's due to sensory overload rather than just "bratty behavior."

* Accessing funding, incl. carer's allowance, carer's supplement, and certain rebates on interventions/therapies (beyond early intervention)

Potential Negatives

* Dealing with people who have stereotypes about what it means to have Aspergers or ASD

* Your child feeling "different" (but she probably feels different even without the official label)

Personally, I think knowledge is power, and for me, having deeper insights into "how" my daughter is wired has been invaluable.

Edited by baddmammajamma, 09 June 2012 - 05:00 PM.


#8 tibs

Posted 09 June 2012 - 05:01 PM

A colleague had her daughter diagnosed and she regrets it because she feels now it is a cop out for the school and that they don't try as hard to ensure her daughter reaches her potential as they do with the other kids.  She also thinks her daughter has missed out on some opportunities because of it or particularly because of the stigma attached to it e.g. the teachers don't want to risk picking the autistic girl to represent the school etc.  Just her opinions she has shared over the years so of course not necessarily what would happen in your daughter's case original.gif

#9 madmother

Posted 09 June 2012 - 05:03 PM

What she said! <-

I have seen a lot of kids on both sides - diagnosed, and not diagnosed. Or the far harder and more tragic, diagnosed LATER.

There are pros and cons for both, as you said.

Some kids I would have sworn were Aspie when young have either learned adaptive behaviour and are coping, or I was wrong and whilst they had quite obvious traits, to myself as a non-professional, it was not ASD and they grew out of them as they matured.

Some kids have become far more pronounced as they have grown older, and have now ben diagnosed at the beginning of high school. To them this diagnosis is a stigma, a DISability, more reason why they are bad/abnormal/outsiders/lonely.

My son is proud of who he is, and being Aspie is one of the things he is proud. In our house it is known as differing abilities, not a disability. He knows what he struggles with, he also knows the incredible strengths he has. Some Aspie, some just being a boy.

For others, the school, his friends and peers, it helps them understand the differences, it gives him leeway to be different, it is starting point for their researching things that puzzle them that he does.

His skin, his mind, his life, his Asperger Syndrome all roll into one mostly happy (hey - he is a 14 year old boy), weirdly popular, unique advocate for those on the spectrum.

Diagnosis, in my opinion, may seem unimportant now, but will it be more important later and will it cause her to feel differently about herself by then?



#10 baddmammajamma

Posted 09 June 2012 - 05:08 PM

As always, madmother said it better than I could! original.gif

#11 madmother

Posted 09 June 2012 - 05:12 PM

QUOTE (tibs @ 09/06/2012, 05:01 PM) <{POST_SNAPBACK}>
A colleague had her daughter diagnosed and she regrets it because she feels now it is a cop out for the school and that they don't try as hard to ensure her daughter reaches her potential as they do with the other kids.


I would NEVER stand for this attitude, and there is something really wrong with any school that does!
Not saying it doesn't happen, it is the reason we did not attend the school nearest us.

QUOTE
She also thinks her daughter has missed out on some opportunities because of it or particularly because of the stigma attached to it e.g. the teachers don't want to risk picking the autistic girl to represent the school etc.  Just her opinions she has shared over the years so of course not necessarily what would happen in your daughter's case original.gif

This actually happened to us. The teacher looked me in the eye and said "Oh, we didn't pick him because of his autism."

The school the competition was at is the school he now attends. The principal commented to me last week (after this year's comp that my 2nd son was on the winning team for), "You realise Boy 1 would have won this hand's down..."

Yes, I do.  mad.gif  I knew it when they did not choose him.

BUT having ASD means you need help, you need to access the incredible minds differently, you need to give these kids the cognitive, behavioural and emotional tools to cope. Without diagnosis this will not happen, and the schools will tolerate little.

As the mother of one son with ASD, and one with behavioural issues, let me tell you the one with ASD gained everything, the other has no support.




#12 Aribika

Posted 09 June 2012 - 05:18 PM

We are in the process of getting my 9 year old son diagnosed.  Yes it is late and I do wish I had done it earlier but he is high functioning.  I think he has Aspergers. My sister who is a child psych ( blink.gif ) didn't think it was worth having him labelled and managed to talk me out of it for a while.

The way I see it he is labelled any way.  Just not officially.  He is the difficult child or the child who tries to tell teachers what to do or the one who speaks before he thinks and probably many other things so why not be the child with Aspergers who can get some specific help. I also need strategies to help him learn the social skills that I don't know how to teach him because it just came naturally to me.

Lorraine

#13 Acidulous Osprey

Posted 09 June 2012 - 05:24 PM

What Aribika said.

And remember that while you might not need funding, the school can access funding with a diagnosis which directly will benefit your child.  I used to have a quiet resentment of the parents with obviously quirky kids at our school which had a high population of kids with ASD and who wanted the school to deliver the same or similar services to their kids but who refused to label their kids.

#14 Propaganda

Posted 09 June 2012 - 05:26 PM

I wanted a diagnosis for my child so I knew if the way she behaved was simply her, or if it was a syndrome making her that way. I wasn't after funding or anything, but if I knew there was something I could be working on to make her life easier or if I knew she had reasons why she is the way she is, then I would have been able to have other parents to talk to and discuss these things with if she was 'labelled.'

#15 JaneDoe2010

Posted 09 June 2012 - 05:30 PM

QUOTE (unicorn @ 09/06/2012, 04:43 PM) <{POST_SNAPBACK}>
My son is fairly high functioning and unless you spent a good deal of time with him probably wouldn't pick up that he has any issues, but we have a diagnosis because although for the most part we manage fine, it allows some leniency for him, it allows him to have a pass card at school for the rare occasions that it gets too much for him and he needs to get away from the noise and chaos that happens in the class room. We don't medicate or go for treatments of any kind, but that option is there for us should I decide that would be the best thing to do.


If my daughter does have ASD, this would be us. The only two issues that people might pick up are her anxiety and not doing well in group situations. The rest are things that the more I read, or talk to people about, I keep going "OH!!" as they fit in the ASD box. BUT... so many of us are like that!! AHHGG!!! That's my confusion!


QUOTE (woofer @ 09/06/2012, 04:49 PM) <{POST_SNAPBACK}>
OP sounds like your mind is made up against getting a dx but I imagine a dx will get yr DD some aide help at school.


No my mind is definitely not made up - I'm so torn by this, I'm just thinking about it all. I just want the best thing by her - if that's a DX of ASD then that's ok, if it's just a DX of "your child is quirky and has some issues" then that's ok too.

Thank you so much for all your comments. There is so much to consider and I haven't looked at how a DX or no DX might hinder/help her when she is older but I will now.

She has seen a paed for some issues (some that are related to this, some that are not) and he indicated it could be a *slight* possibility, and the teachers agree that there are quite a few things that fit in the ASD box, but she's seeing a psych next week so it will all start properly from there. She needs to see the psych anyway for anxiety, so either way she's on the right track there.

Edited by JaneDoe2010, 09 June 2012 - 05:33 PM.


#16 TheLittleRedHen

Posted 09 June 2012 - 05:32 PM

It's also good to stop having to wonder and worry about "Is it or isn't it?"  because that can really do your head in after a while.

Edited by InterruptingCow, 09 June 2012 - 05:33 PM.


#17 JaneDoe2010

Posted 09 June 2012 - 05:34 PM

QUOTE (InterruptingCow @ 09/06/2012, 05:32 PM) <{POST_SNAPBACK}>
It's also good to stop having to wonder and worry about "Is it or isn't it?"  because that can really do your head in after a while.


Oh man YES IT DOES!!

Interestingly the people she seems to be gravitating towards at the moment are also either Aspies or unDX'd possibilities.

Her school is VERY ASD friendly too, which is great either with or without a DX.

Edited by JaneDoe2010, 09 June 2012 - 05:37 PM.


#18 JaneDoe2010

Posted 09 June 2012 - 05:36 PM

.

Edited by JaneDoe2010, 09 June 2012 - 05:37 PM.


#19 madmother

Posted 09 June 2012 - 05:39 PM

Life is full of labels. I am blonde, I am loud. I am Wise Woman's daughter, I am Boy 1's mother. I am h
that old chick who used to derby, I'm the b**ch, I'm the saint, I'm... you know.

A label only becomes an issue when you make it one. For my son it is not. The situations and things he faces CAN be, but they do not become such because of the label. They become such because of behaviours or judgement... And to be honest if people are going to judge you they will anyway.

You have to give them the self-belief and understanding of WHO they are to ignore or educate the people who see them as labels only. All kids need this self-awareness, not just kids diagnosed.

My son does this. He will happily explain why he stims ("Mum calls it my body speaking"), he will tell them about Asperger Syndrome. He will help THEM understand HIM.

Because he does. And the label doesn't change that... in fact it helps.


#20 Sprinkles :)

Posted 09 June 2012 - 05:39 PM

Positives would be understanding, carers allowance and yearly bonus, teacher aid time, flexibilty during exams, at uni and help with finding a suitable job, the extra medicare session to see an OT or pysch.
Negatives- i do know one older girl who had very minor traits and as soon as she had a diagnosis starting acting out and regressing severly because 'theres something wrong with me now' but I cant really think of any others. It's a diagnosis not a label and if it will help you understand your child then its worth finding out either way.

#21 FeralZombieMum

Posted 09 June 2012 - 05:41 PM

I've found having a diagnosis has actually opened up doors for my DD, in regards to her education.

It's also been good for her self esteem. Early on in primary school, some teachers used to lecture her in front of the entire class, about her 'behaviour'. She was also removed from the classroom many times, in her first year of school. sad.gif They weren't very accepting of her, and her quirks. They also judged us as parents, and we were made to feel like we could make her behave how they wanted her to behave. Being our first child, we listened to the school, and our DD suffered more than she should have. sad.gif Once we had her diagnosis - we realised that a different approach was needed. We had to stop trying to force a square peg into a round hole.

These days, I hear of stories where the school and parents think a child might have an ASD - but the school isn't putting any supports in place. Once the child has the 'official' diagnosis - then suddenly the school is willing to make adjustments. It upsets me that schools aren't willing to work with the child, as an individual, regardless if they have a label or not.

#22 sparassidae

Posted 09 June 2012 - 05:46 PM

I agree with all of the above. We spent almost 12 years wondering "is it just him? Is he normal? Is it just his personality? Is it because of his giftedness?"

At almost 12 yo my eldest was dx with Aspergers, and TBH it was a huge relief. Better insight into how his mind works, WHY he acts the way he does. He already felt different, and to him Aspergers is a better label than 'weird'.

He changed school anyway because of starting high school, so from day one they have been proactively asking "what can we do to help?" which is very nice.

More understanding from extended family- again it's about having a recognised condition rather than just being weird for no reason.

The carers allowance is a help towards treatment costs (for him at the moment it's visits to a child psych)

#23 BlondieUK

Posted 09 June 2012 - 05:47 PM

Behaviours that look the same on the surface can have quite different causes, and need different techniques to deal with.

For example, I have a friend with a child who has been diagnosed with ODD (Oppositional Defiance Disorder). Sometimes, he and DS1 look like they are having the same melt down, but DS1's is because of a difficulty with transitions, and her son's is because he will automatically defy/do the opposite of what is asked. What works for DS1 will not work for her son and vice versa.

That's why a diagnosis is important - because everyone (even on the autism spectrum) has slightly different behavioural quirks and clusters of problems and needs an individualised approach.

If a child psych is telling you not to get diagnosed, then, IMHO, that is contrary to best practice for learning in both school and in general life management. Being diagnosed and not telling people is one thing, but you need th best information you can get, and that means a proper assessment by a professional.

#24 baddmammajamma

Posted 09 June 2012 - 05:51 PM

Good luck, "Jane Doe!" I know from firsthand experience that it is a big step to actually go through with a proper assessment.

Be sure that your daughter is assessed by someone who really does understand ASD and uses gold standard assessment tools -- high functioning profiles, and in particular, girls with them, can be tough to properly assess if a professional doesn't have the right experience/expertise or just makes the diagnose (or rules out ASD) after a cursory appointment.

#25 lishermide

Posted 09 June 2012 - 05:52 PM

I've always said that the best thing that ever happened to my son was getting his diagnosis. It didn't change who he is, that was always him. What it gained him was understanding.

I can't imagine not accessing him that understanding from everyone around him for the sake of "not having a label". Or worse, because he won't be able to do x job if he decides he wants to. I guarantee if the job won't take him because he has Asoergers, it's not the job for him. He's an amazing kid, I'm certain he'll find his feet in the world. Understanding in his formative years, access to interventions to make up for his deficits, all this will help hm get where he wants to be. The label is helping him.

Edited by lishermide, 09 June 2012 - 05:53 PM.





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