After 5 years my daughter has finally been dx with AS

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Hi

Just found this site and really need to talk to people who understand.

My dd (7 years) has had ongoing difficulties with her language/communication and attention from the word go really.

I have queried autism since about 18 months but it has always been ruled out as she has a language disorder.

Once she hit 6 it became far more apparent that she was asd and the obsessions, meltdowns and self harming really became a problem.

She is in a unit for children with language disorders.

Finally we have now received a dx of Aspergers, Adhd (she is on medication for this) and language disorder.

Received the dx yesterday and have felt really upset. In a big way I am relieved but in another way I am heartbroken.

The future seems so bleak right now

Would appreciate speaking to others in similar position.

Am finding it hard telling anyone but immediate family and friends but on the other hand don't want people to think I am ashamed.

B xxx

Welcome to Wrong Planet.

I had a grieving period when I first realized what I had AS. Then it was mixed with relief. Then only relief. And now I'm just going along with my AS. I don't let it dictate what I can or cannot do, but I rely on it to tell me what I need to do in order to not have meltdowns. It helps identify difficulties and how to cope with them. This forum helps too.

definitely went through a grieving period~horrible in fact, as we got the double whammy!( hubby and son dx'd within 1 month of each other.....finally feeling better, but now we go for an eval for daughter. it is overwhelming at times.hang in there

i went 34 years without a diagnosis so feel lucky you have an answer and a lot of books and knowledgable people, your daughter is not a bad kid, youare not a bad mom.....it is a shock but it will be rteplaced with relief and acceptance and then you can make changes.

good luck

Hi there,

My DD just got her diagnosis about 5 months ago (she just turned five years old) and it is overwhelming at first. One thing I did was to read everything I could get my hands on about AS since I really knew nothing. Educating myself made me understand my daughter so much better.

Once we had a diagnosis we began some therapies that we felt would help my DD cope better. She is now in a social skills group which she loves and it has helped to interact better with other children at school. She is also working with a psychologist who specializes in helping children on spectrum. They try to target things like improving my daughter's flexibility, dealing with anxiety, how to handle frustration, etc. It has helped enormously. I realize every child is different and your DD may not need these things, but it has worked for us.

Don't despair. I fully realize my DD will always have AS and I love all her quirks and who she is. And, I definitely feel since diagnosis I "get" her so much more, where before I did not understand why she acted certain ways, and why some things would upset her. Now that you know your DD has AS you can focus on getting her help with any "issues" you feel need to be addressed.

Good luck to you and your daughter. Just so you know there are four other girls in my DD's social skills group with AS. You are absolutely not alone!

Katie

hi and welcome. did you tell your daughter yet?

yes, at what age does onbe tell their daughter they have aspergers?
and how does one go abot it?

that's a tough one....my 7 year old is going for an eval in August~haven't really thought about what we'll tell her when the results come in. we plan to tell her that she's going for some tests so that she can do better in school ( she's aware that she has difficulty with math, spelling, and handwriting)...i just don't know what we'll say other than that.
when my son went for testing at age 13, he was incredibly interested in the results and , once we had processed the results ourselves, we shared the result with him....as there were some parts of the report i didn't feel he was ready to read, we did not share the whole thing with him...when he gets a little older, we'll let him look at the full report...we just shared the dx, what the dr saw as his strengths, and what the dr saw as his weaknesses.

my mom told me almost right after i got the DX. about a month.. she didn't want to shock me with it in my teens when i was going through other stuff and she didn't want me to not know why i acted so strangely compared the other kids my age. I knew something was different.. it upset me that i did not know what.. she told me..

Welcome friend, you came to the best place.. I think when I finally got the dx i was jumping for joy.. after years of Drs and teachers telling me that there was nothing wrong with Ryan I was so happy to slap it in their faces.. especially the Dr. in a practice who told me tha tI needed to be a stronger parent. if she did her job I would have gotten help a lot sooner for my son! So think of it in the long run.. you daughter has early intervention so now se can get all the help she needs and she can be treated for what is really wrong with her. no more playing around.. you have what you need for her life now.. take it and RUN! i know that sounds cold because no parent wants to think of their child as having a disabilty.. its heart breaking.. but she has a much greater of a chance to lead a better quality of life now that you and the dr's know. I say Kuddo's to you mom for getting this far! the road is long ahead but now you will see a light that you never thought of! as for telling your child.. I did it after a few months so my son could get a better understanding why he went thru those dr test.. he understands better now.. keep the faith...

Hi everyone

Thanks for the warm welcome

Sorry I haven't been around since my first post but it has been a very mixed week for me!

A big big part of me is relieved as I think I always knew (after seeing numerous pros who reassured me it wasn't an asd) that that's what she had. The other part is of course very sad that she now officially has a life long disability

I am seeing dd in a totally different way which I feel a bit bad about. She is still the same person after all.

The family have all sat up and listened and now we have all this support and I am like but she is still the same person, nothing has changed!

Told my ds (8) who has a few friends with AS and when I said "dd has what "Pete" has he was like "oh that's not too bad then lol!". I asked him if we wanted me to get him a book and he was very against the idea so I will just let him carry on the way things are.

Is there anything as adults that you wish had been done for you when you was a child?
I just want to do everything in my power to help dd.

Also how many of you with AS or children with AS also have a co-morbid dx of Adhd? Dd has and I just wondered how common it was?

Thanks again

Boohbah xxx

"Is there anything as adults that you wish had been done for you when you was a child?
I just want to do everything in my power to help dd."


Hi Boohbar

You sound like a wonderful, caring and thoughtful mum!

Have only found about about my status in middle age. My mother tells me that she knew that my differences were connected with autism right from when I was a toddler but the doctor didn't recognise it when she asked him about my behaviour/hyperlexia/little professor thing. So she brought me up as normally as she could.

I think that was the very best thing she could do: not to make any issue of it, but she did quietly work hard on eliminating my more unacceptable behaviours I suspect.

The one thing I would have much appreciated is any form of gifted child education. I was bored rigid at school and didn't achieve anything - when I could have done sooooo much better. My natural taciturnity meant that teachers didn't spot any problems or boredom and I slipped through the net.

Education is never one-size-fits-all for any child and certainly not for spectrum kids, who perceive the world so very differently from most other kids. This in itself merits special education, regardless of how 'clever' the child is. Dear, o dear, it makes me mad to think of all that unused, untrained, slipped-thro-the-net innovative Aspie brainpower that has just been unnoticed and frittered away...

[quote="Boohbah"]Hi everyone

Thanks for the warm welcome

Sorry I haven't been around since my first post but it has been a very mixed week for me!

A big big part of me is relieved as I think I always knew (after seeing numerous pros who reassured me it wasn't an asd) that that's what she had. The other part is of course very sad that she now officially has a life long disability
[\quote]

Read this article: http://www.msnbc.msn.com/id/7030731/
ASD is a *difference* not necessarily a disability. Yes, she will have difficulties, and you'll have to help her learn workarounds. But she also very likely has some advantages. Look for those, and help her develop and celebrate them.

This isn't a death sentence - she doesn't have a terminal illness (except the one we all have - called Life. ) She has a loving supportive family (you sound like a great mom!) and she's a very lucky girl.

Keep loving her and being proud of her for who she is. She'll grow up to be the best person she can be - and with Aspies - that can be downright awesome!

I am wondering why your daughter has a diagnosis of Aspergers when she has had language difficulties? I notice alot of people lately saying that there kid had language delays or didn't start talking until late and they will give them an Aspergers diagnosis which is not supposed to have any language delays. If there are delays present than autism would be the correct diagnosis. And neither label has anything to do with intelligence or IQ or that higher functioning people have Aspergers and lower functioning people have autism. If they are now diagnosiing AS with language disorder how do they distinguish it from autism?

I think looking at this site and others (like Neurodiversity) will show things from the more positive side. And be careful about some of the parent support groups and websites because they are the ones who often paint a disparaging picture - while trying talking about trying to "cure" the person of their autism. And your daughter is really the same person she was - regardless of the label.

People with Asperger's can have language delays. My aspie partner had language delays.

The confusion is caused by the distinguishment between HFA and Asperger's.

In North America the specialists rely on the DSM which does not distinguish between High Functioning Autism and Asperger's Syndrome or Disorder, which ever label you prefer. In North America HFA and Asperger's are the same thing.

In contrast, the diagnostic manual that is used in Europe does distinguish between HFA and Asperger's based on symptoms such as language delay.

We ARE in the U.S. and the distinction was made based on the language delays. I was reading a study among schools in the US where they were labeling Aspergers instead of autism - despite not meeting the criteria apparently because the term Asperger's was more palatable to the families. I guess I really don't understand the excuse for not following the diagnostic guidelines because it seems ot be for "cosmetic" reasons - otherwise autism, Aspergers and PDD-NOS would really be the same. People with AS usually have very good language skills (little professor type) - and things like having a literal understanding of statements is not a delay. Not to go on and on about this (lol) because I don't see the huge difference between the labels but still - if there are criteria then they should follow them. Otherwise that will even further the stereotype of an autism diagnosis if the "higher functioning" people are referred to as AS when those with autism can be just as high functioning.