To diagnose or not to diagnose ....

[MrsBrollyhook]

Looking for advice from those who have either had a diagnosis for their child of aspergers or HFA or have decided not to pursue a diagnosis. My husband and I are finally after many years pretty sure our 9 year old DD has some sort of ASD, but are torn about whether a diagnosis would have a positive or negative effect. She had struggled socially since preschool and the differences were raised by school when she was in reception, but progress

[MrsBrollyhook]

Posted too soon! Should have said progress has been made until the last year when she seems more different to her peers. Also her pacing had got worse which I believe is stimming. I could go on with the traits - stubbornness, only eating dry food, withholding stools, aversion to loud noises, string smells etc.

[2boysnamedR]

Do you get any input from the nhs? Are you under a pead?

[MrsBrollyhook]

We haven't sought any external support until the last few months when we've involved the local authority educational psychologist through the school (just 1 meeting so far). School have been great and have helped with the social skills by giving her time with a teaching assistant who had autism experience to work on social stories etc. And they have also introduced a circle of friends with her 4 closest friends to help her to join in more. But other than that we've not had any medical help.

[millimoohoo]

my ds was diagnosed with aspergers age 11. He was delighted to get the diagnosis ! he felt a sense of relief to finally know why he was different to his peers and we have been able to access lots of resources to teach him about asd. I pondered for ages, but his differences became more marked as he got older so I felt it was right to do it. I have no regrets so far and have found only positives.

[MrsBrollyhook]

Thanks Millimoohoo that's great to hear your ds responded so well. Can I ask what he's been able to access that had helped him?

[senvet]

my relative was diagnosed in her late 40's saying "it is good to know that what separates me from my fellow human beings is not, after all these years, my fault"

A few years earlier she had been suicidal because, when her job moved away from her home town. The company arranged a house share for their few employees, and she was unable to manage.

She is now happy and did a sky dive for her birthday!

So I guess you will know when having an explanation may help dc, whether it gets given a name like ASD or a description like, 'difficulties with social communication'. As long as she is not blaming herself for being different from the majority and unable to meet their expectations that she should behave like they do.

Hope this helps

[MrsBrollyhook]

Thanks Senvet. I do see the value in getting more help as I think the teenage years are only going to make it harder being different. I just worry that her already fragile confidence could be knocked even further by a diagnosis of being different. I wish there was a crystal ball to tell me what might happen!

[senvet]

Has she ever had anything like counselling or cognitive behaviour therapy? I am expecting a "no", but if there is anyone she opens up to, it might help to understand what burden she is carrying, and with a chunk of luck, what you could do to help.

For my dcs getting across that it was not their fault, (and having ourselves to apolgise for telling them off for things that they could not help), was a really good breakthrough moment.

Good Luck

[MrsBrollyhook]

Thanks Senvet. She does open up a bit more to my mum. I think you're right about finding out how she feels in herself, I just don't want to jump in with questions about the differences between her and her friends! X

[2boysnamedR]

I think my ds has asd, I was toying with getting him tested because he already under pead, ot, physio etc. he is getting help for most symptoms as part of a dyspraxia dx.

Again as he gets older I feel more that I need to get to the route of why he is as he is. I think right now it will open more doors.

Disclosure is as needed. For you and then her as she grows up. It's not a neon sign if you don't want that

I'm dyslexic, work don't know and I will never disclose it either. Not out shame, it's just not their business - until it impacts on my job at which time disclosure might help me

[2boysnamedR]

I think knowledge brings power too. Even if that just the power to say "I'm unique and that's fine"

[MrsBrollyhook]

Thanks 2boys. Sorry I didn't reply last night - fell asleep on sofs and decided it was bedtime! I think you are right - me and her dad think we know she has ASD and the teachers and ed psych are implying it - it feels like we are keeping something about her a secret from her at the moment. As she gets older I think she might question why we did that if we don't go down the diagnosis route. It just scares me that it could backfire and she could take it badly. But high school is a year and a half away and I can see her having difficulties without support.

[MrsBrollyhook]

My other concern about diagnosis is that she found the 7 mins she spent with the ed psych distressing enough that I worry she will be traumatised by being assessed!

[Branleuse]

knowledge is power. I would always go for extra help if available. you don't t have to tell anyone not involved about any diagnoses, but its definitely better for you and professionals involved to know.

[SlicedAndDiced]

I will be pushing for a diagnosis for my dd, who is displaying many of the same traits I did.

I spent a large part of my life isolated, depressed and convinced I was from a different planet, I just didn't fit it anywhere.

It was like a huge weight off my shoulders when my gp referred me for diagnosis of high functioning autism. I can't even begin to explain how having a tangible reason has made a difference to my life.

It has also meant I can get the support which means I am going to university to study law this September (a life long dream but impossible before)

I would definitely recommend a diagnosis.

[Ineedmorepatience]

Get the diagnosis if your Dd needs one!!

I have a Dd with ASD she is 12 and has just moved to secondary school, it is very tough, even with a diagnosis!!

Google girls with aspergers, there are some good articles written about the effects of not diagnosing.

Good luck

[OldAntiquity]

I'm 40 and am as sure as I can be without an official diagnosis that I have Aspergers/HFA. Childhood was not easy and it got worse. I wished I had known the reason why I was different. Eventually at 13 I refused to go to school, I was supposed to see the ed psych but I ran away the morning of the appointment because the thought of sitting in a room and being expected to speak to a complete stranger terrified me. What I did, to avoid anyone noticing me was to internalise it all. I ended up depressed, self-harming and bulimic then used alcohol when I was old enough. I couldn't ever understand why I couldn't be social, make small talk and just get through life like everyone else seemed to.

ds2 was diagnosed just before he was 3 last year and so I did buckets of research and saw myself described and every issue I had fit, selective mutism when little, tics and twitches, obsessions, routines, repetition. I didn't even know I used echolalia. It was such a massive relief initially, that there was a reason, that I wasn't just shit at being a human being. But then I crashed because it changed my whole history, it explained the times things went horribly wrong with people and that I must have come across as so strange and messed up to them.

Anyway, I also realised ds1 most likely is as well and last year when he was having another why am I so weird bout of misery I told him he most likely was. He's bloomed since then though we're waiting to see how he deals with secondary to see if we need a diagnosis.

I would say, with the problems your dd already has that I would definitely go for a diagnosis. It helps with getting help in new educational environments and it will help her understand herself. That's not to say she wouldn't take it badly initially, but in my experience, it would be better in the long run.

[mactavish]

I've also been researching this a lot recently and think it is definitely kinder to do so. The truth is always the best path to pursue. Our DS is still a little young to tell just yet, but I have already started progressing one of the steps towards telling him.
There are some YouTube videos with lots of different techniques on how to tell your child. Watch a few of these and see how you feel afterwards. Good luck :)

[senvet]

old, sliced and all the other late-diagnosed folk, massive respect to you for battling on, and so glad that you have made it through the excluding, unaccepting nature of the mainstream world.

The mainstream world's report should read 'try harder, could do so much better'

[OldAntiquity]

senvet That's really quite condescending. I lived, and am living, my life with easy bits and rough bits and fun bits and sad bits, much like everyone else on this planet.

[2boysnamedR]

I think on and off I have hfa too. I felt like i was in bubble as a child. No friends until I went to secondary school.

With my ds I drip feed him info on dyspraxia. He knows he has it, I add what that means to him little by little but he's 7.

We talk about it causally so it seems normal and boring so when he asks "when will I be cured" the conversation hopefully will be a bit smoother.

Could you do some pre warning? Like " you know you find xyz tricky? Some one wants to come into school to see if we can make it less tricky" then after talk about the assessments, then say "they think xyz might help" and leave the diagnosis for a while.

All kids are so different. Maybe that would work for you.

With ds I could say "look it's dyspraxia you'll never ride a bike mate and I certainly will never let you drive me anywhere!" I think he would just raise eyebrows like I'm mad. So I keep the drip feeding so it becomes part of normal life.

[Branleuse]

there are no disadvantages. it will open up so many doors of support