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Please Tell Me How Your Aspie/HFA Were When Small??

(10 Posts)
RockinHippy Fri 12-May-17 09:54:33

Just that really.

Teen DD has health problems with some symptoms that I know are similar to ASD, since these symptoms became more obvious, she has had at least in part a diagnosis (she now has 2 diagnosed conditions with some crossover symptoms)

I was aware that she does have ASD traits, but we had other answers, so I was never really concerned, especially as she was such a bubbly, gregarious little butterfly when she was smaller. Always very sensitive to the needs of her friends/others & she had a wide group of friends to the point where here whole school knew who she was & greeted her on the way in. She made friends easily wherever we went.

She went through a period of bullying, plus her health problems got worse, eventually leaving to the second diagnosis of functional B12 deficiency. This changed her attitude with friendships & she is much more withdrawn now.

We have had problems medically, so I have had to go the route of private DNA testing to hopefully find an answer as to why she needs so much B12. This has thrown up a report that shows gene mutations that mean she can't process Vit D properly, so needs more than usual. Something our GP has already picked up on. It shows up a gene mutation that answers the mystery of why she needs much more B12 & a Folate metabolism problem too.

It also shows she has a gene mutation for autism 😐

I know that as she is now, she shares a LOT of ASD traits, but bar SPD, which turned out to be a symptom of her EDS, I didn't think she had ASD traits when small, but now wonder if I am wrong & she could actually have this too ?

TIA

RockinHippy Fri 12-May-17 10:12:26

I meant to add GIRLS in my title 🙄 I believe ASD girls can be different to boys & less obviously struggling

RockinHippy Fri 12-May-17 12:38:15

Anyone?

Polter Fri 12-May-17 16:31:33

I don't have an autistic dd but was diagnosed autistic as an adult. Autistic girls often develop along the fringes of typical development until it all comes crashing down when demands exceed capacity. Rachael Lucas's YA novel 'The State of Grace' gives a good insight into autistic teenagerness and there's some wonderful recollections in Laura James's 'Odd Girl Out' that certainly resonated a lot with me. Both authors are autistic.

It's most definitely worth going for assessment/diagnosis if you suspect autism.

What does dd think?

ConstantCraving Fri 12-May-17 21:45:06

My DD is 7 and has no friends, has never been to a friend's house and plays alone. She has no desire (yet) for a friend and is happy as she is. She does like the adults at her school though, and i think sees them as friends.
She has obsessions that wouldn't seem unusual for a girl - but they are all that she thinks or talks about. Aged 3-5 it was chickens, 5-7 it's princesses and fairies. She draws them, watches the films, collects (not plays with) the dolls, dresses up as a princess etc. It's the intensity of the interest that is different.
She is highly sensitive to noise & touch & taste. Very limited diet.
She read and spoke early, knew all her colours and shapes etc - but she has a severe language disorder (receptive) and cannot process or follow conversation.
She hates change and needs routine and a timetable, panics if there isn't a plan for the day (or even the hour!)
Didn't sleep as a baby unless I walked her in the pram for hours. wouldn't be held by anyone but me and DH.
But she has goodish eye contact with me and Dh (not others), is funny and very loving and cuddly.
- BUT that is my daughter and I know other girls with ASD who are very different. Hope you find some answers.

RockinHippy Fri 12-May-17 22:09:21

Thank you Polter I will check out those books.

Can I ask what you mean by developing along the fringes of typical development, I think I understand, but want to be sure.??

DD has very much developed in a way opposite to our friends DS who, has autism, thinking on it, we do know quite a few ASD kids, but all are boys, & thanks to an old friend whose DD we don't know sharing stuff about his own similar age DD on FB, it's only now I'm really realising that girls can be very different, but I don't know how she was when small.

DD was always very ahead of expected milestones & very sociable, she's also always been so well behaved, never in trouble at school, a real stickler for the rules etc, no melt downs & running out of class etc, which had me rule out ASD as a reason for her sensitivities.

The Autism gene mutation has really thrown me TBH, I don't know what to make of it, she definitely has traits, but then she doesn't too IYSWIM. Meltdowns do happen now, but it's tears of frustration & exhaustion rather than angry outbursts & she definitely needs time away from noise & people to recharge herself. She is very bright, but her obsessions if you could call them that are more typical teenage girl things such as make up.

She is quite quirky though, hates what she calls "basic", hangs out with a more alternative crowd, but then I suppose her dad & I were the same. She has friends, but does in more recent years struggle with friendships too. I'm not always sure that her good friends, see her as being as close as DD does them if that makes sense. She can be very black & white too, I was a bit shocked at how coldly she just dumped her first boyfriend, she's been with him several months & they were both weirdly adult about their relationship & both very intense & very much "in love" . He did one thing wrong, she talked to him & told him how she felt, even though he reassured her, she didn't like his first answer as it was a bit knee jerk & that was it, she dumped him, yet she is heartbroken, but putting on a brave face for the world & especially him😐

How DD would feel about it, I don't know, but I suspect she wouldn't see it positively. She has gotten quite angry at times when ASD kids have kicked off around her, disrupting class etc, her attitude is that she has health problems too & noise hurts etc, but she doesn't behave in that way. I actually suspect her BF may have some sort of diagnosis & when I suggested she might think about cutting him some slack as he had her when she was feeling depressed & anxious & she bit my head off about being sick of people making excuses for bad behaviour & sometimes people are just shits, she never swears, so even that was strong language & angry for her. Though I know she has been hurt physically a few times by ASD boys, even relatively recently where she had a head & eye injury that needed A&E & she was fuming he was using his ASD as "an excuse"

I'm very gently introducing the idea as a maybe, what does she think, but I'm walking on eggshells as I don't want to upset her & trigger anxiety/depression flare ups

RockinHippy Fri 12-May-17 22:14:31

Sorry, cross post Constant, m a slow type & distractions here right now

I will be back to reply properly, but interesting as I can see big differences & similarities there with my own DD too

Polter Sat 13-May-17 08:44:00

By fringes of typical development I mean things like anomalies between abilities and struggles (often called a spiky profile) or where it looks almost like a child (or adult!) has little gaps that you might not be able to put your finger on. When I look back for me (and I've heard other autistic women explain it exactly the same way) it's like I missed random lessons in how to be a person. A bit like when you miss a bit of basic maths and then don't have that building block to build on.

Based on what you're describing here I think it's worth pursuing, but tricky I know. I think she'd benefit from learning more from what autism feels like from within as a counterpoint to her seeing autism as what's seen from outside.

1nsanityscatching Sat 20-May-17 20:25:41

@Rockinhippy Dd was diagnosed with autism around her second birthday, she doesn't present anything like her more typical autistic brother in fact they are polar opposites. Dd is very sensitive and probably has too much empathy in so far as some of the topics covered in a secondary school curriculum are pretty traumatic for her and she is offered alternative work/texts/topics.
She is incredibly articulate and has been from being quite young. She sounded like an old head on young shoulders when small but it's not as noticeable now at 14 although she has a sensible and mature attitude.
She has never misbehaved in her life she always does as she is asked, first time, every time. Her HT at primary referred to her as Little Miss Perfect at the leavers' assembly which was pretty accurate.
She gets on with most people although she avoids the "naughty" ones because she doesn't find rule breaking easy. She has a group of close friends and is liked by the majority of the rest because she is very kind and a good listener.
When she was young she was the most even tempered child you could meet, she still hasn't got a temper but she cries easily through stress anxiety and frustration.
She never had obsessive interests and she has never talked at length about topics and she understands social conventions really well. She has always had impeccable manners,I remember the paed who saw her before she started nursery saying I was raising a lady as even at three she knew how to use excuse me,i beg your pardon,would you mind as well as the usual p's and q's.
From the outside looking in I'd say no one would guess she has ASD indeed Autism Outreach couldn't identify her in the class or on the playground and the Ed Psych had to have her pointed out to her so that she could observe because she slots in really well.
Dd had a chromosome check to rule out any genetic cause for her autistic presentation and her chromosomes are entirely normal although her paed said he expected that with advances he would expect in future that our family would show some sort of fault on chromosome 15.

Waitingforsleep Sun 21-May-17 21:30:08

Can I ask what an autism mutation is? We were refered to have blood tests but Dd is so frightened and they said it wouldn't show anything anyway so i haven't done it. Wondering if I should do.
From the surface she does sound on the spectrum although I'm not sure what her other dx are as they may explain some things?

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