Flamechick referral update thread

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Well, we're back.

As expected, I froze and forgot half of what I wanted to say

Dr announced she is not autistic - never said that I thought she was, and never have thought she was.

He said that AS can't be determined until they are at least 7 yrs old and they have a full grasp of language... and he will see her in another 6 months

Says she is just very shy and that no children like change.

Come away feeling a bit vague tbh. I know I didn't say most things properly, and forgot loads of stuff. She was making eye contact with him which is impressive for a stranger, grunted as usual instead of bothering to speak.

This pretty much means I'm in limbo for the next 3 years doesn't it?

Never heard such rubbish - your GP is quite wrong to say they can't diagnose AS till 7, and to say you can't diagnose till they have language is also nonsense. The trouble with ASD is that it's a spectrum disorder and so you can be very very mild or very severe or anything in between. Some docs are clearly just ignorant. They should also be able to tell you the difference between autism and language delay - which, as I understand it, is basically that with language delay there is still the desire and ability to communicate, eg through gesture, eye contact, pointing etc - whereas with autism the child doesn't seem to want or need to communicate and prefers things to people. We got a diagnosis at 3, and it is relatively simple to see if they meet the criteria on the three areas of autism - social impairment, languague impairment and imagination impairment. Think your doc may be a moron. It could be that your DD has very mild aspergers, or she could just be shy, or something else - but he certainly shouldn't rule out ASD just because she's not yet 7!!

Thank you!!!

I was starting to wonder if I was completely insane!

I can't tell lately if DD has language delay or just issues forming the words (does that make sense?).

Whatever DD has, I have always stressed to doctor/hv that I know it is mild, but also that there is that "something" that is a bit wonky with her.

Ds2 had a provisional dx of AS when he was 2yrs old and it was made official when he was 3yrs. It's a load of rubbish to say that it can't be dx'ed until 7. The reason why 7 seems to be a common age for dx is because it's around that time that it starts to get more obvious that a child is different. It doesn't mean that they can't be dx'ed until then IYSWIM.

Always good to leave them until they are officially "different" to give them/us any support

Sooooooooo glad that her teacher is understanding, just have to hope that she gets lucky next time too. Her current teacher is lovely - I told her what I felt were her issues, she asked how they were best to deal with them/avoid them and that was it. No querying if it was real or not, just that I felt that it was so they would listen to me.

Could it be verbal dyspraxia, which my DS has in addition to his autism. It bascially means he has difficulty remembering words and also pronouncing them - eg often just says the first part of a word, unless it ends in a vowel when he is fine - eg he can say opa, but can't say open. It is better known about in the US than here, and it is different from oral dyspraxia, where the child has difficult making the mouth movements - eg can't blow/suck etc. My DS seems to have some loose connection between brain and mouth when it comes to retaining words in his memory and then forming them with his mouth. Just a thought.

I know with myself I had to write down a lot of things as when I was in the appointments even if I could remmeber what to say various things prevented me from saying all I had to. Plus, writing things down gives the GPS, peadiatricians etc more time to digest what you are trying to say.
You could look at/ask them to look at:

1: How does she communicate? Does she initiate conversations, ask for things or point things out to you?

2: How does she compare to other children her age? When Ds1 was being assessed he spent time in a room with other children his age so they could see how he was with them.

3: When she speaks is there any differences in her rate or rhythm, in what she says, how she talks (doesn't have to gbe a speech delay, she could sound quite stilted or formal in her direction).

4: Does she have any repetitive behaviour, eg need for routines or stims?

5: What is her receptive language like?

Paediatricians.

SnS how do you feel? Still none the wiser i bet? If i were you i would ask GP or HV for a referral to get a SALT appointment for DD. They did this for me and we have been seeing her since before Xmas. One of the first things she told me is DS hasn't got speech delay, it lies deeper than that, it's not a case of going to nursery seeing other children talking and them him picking it up from them. We have to teach him how to use speech in a completely different way as his brain mixes everything up. At least that's one thing they can't deny you if she needs it, bloody lame excuses of her waiting till she's 7yrs. After your initial visit you will be told if they feel DD needs to keep seeing them.

It gets me so and if they try and fob me off in April they will not know what has hit them. Don't give up SnS, if you feel you have been cheated then take it further.

Sounds dubious that they can't dx until 7...

We're all 'different' though, and maybe she's heading for quirky?

It's good to know school are supportive- amazing how important the right teacher can be. Thankfully at her age other children accept her for who she is, as she is.

Sorry, meant to also say Paediatricians - they are so Bing condescending....I don't care if you've seen 50,000 children before- you haven't seen mine*. So don't just act as if our concerns are unimportant, rather than a problem of being away from the golf course for 5 extra minutes

Sorry, rant over.

Right now I feel drunk

I don't feel very convinced that she is completely NT. They are going to see her in 6 months time which is better than nothing.

At the end of the day, my mum has been through nigh on the same child with my sister (we're 99% sure she is mild AS), she says I am doing a much better job of it than she did because I have so much more information than she did.

We're getting on just fine. DD is DD. We know what upsets her, we know how to avoid it. As long as we have support from the school, we can get by.

Yes, I have my low days when I have no idea what to do, but that is when MN comes into its own. I have no idea how I would have got through the last 2 years without all of you.

In a slightly drunken, but completely meaning it way - I love ya all!

((((Flame))))

Got no words at least none that will help

What aload of cobblers

My DD was Dxd with AS at just turned 5.

What type of pead was it that you saw Flame?

On the sauce again eh .
We know you love us all (but mrm the best ).
Not a lot I can say really, except how pants that you're none the wiser. Agree that you should get your list of questions/points written down to take to the next appointment.

I feel a little wibbly today .

It was a community paed I saw - he said that everything has to go through him before you get onto the bigger one (my gp actually referred me to the one higher up).

I am much more settled with everything today than I have been in a long time. Very much in the frame of mind that until September, we're doing ok. DD is my little lady. I know how to handle her, how to keep her calm. Everytime we have a meltdown we work out something new to keep things running more smoothly (the saying emotions thing is working amazingly). I did find that sweet - I asked DD if I was happy/sad/frightened etc on the car journey back home. She said happy. When I asked why, she said because she tells me lots that she loves me, and that makes me happy

A locum GP I saw, on finding out that ds1 has ASD said 'terrible condition, girls don't get it you know' - I corrected him. My friend was told by her GP that girls didn't get autism (her dd was finally diagnosed aged 3). Your dd's gender may go against her.

How do they come up with these random theories? Tis like when they turn round and say that girls don't get dyslexia

I think I have read that AS presents itself differently in girls and you really do need a referral to a specialist developmental paediatricial, or clinical psychologist, or even a psychiatrist.
I think you should keep plugging away at this, don't give up. You started the ball rolling. There may be another paediatrician that specialises in asd in your area, try the NAS, they have a list of specialists in your area, and some of them you can go through your gp rather than consultant paediatrician referral.
It sounds as though they not assessing her because they don't have resources to refer her. I think you should write to the paediatrician and ask them according to the ICD-10 criteria why you dd is not on the asd spectrum. I did, and I think it pushed them to do a proper assessment.
HTH

{{{flame}}}}

thats pretty much the respense we have had as well.

dd2 is now settled in school, steaming ahead.

i just tend to think of her as quirky now. a bit like me

i am just hoping that everything stays 'good' for her and things progress well.

i do think maybe she is very mild/borderline.

and i do have a lot of people asking me if she has ADHD as well, not sure what to think to that as she is very 'hyper' but can concentrate now well. and sleeps better.

Thank you everyone You have no idea how good it is to have people agreeing that I'm not nuts

Misdee - I would love to see our DD's together sometime They sound soooooooooo similar most of the time that it would be good to see them!

For the time I am catching my breath. I will work out the next move from there.