I'm not sure what to say or do (RE: Autism and the like)

[AP]

Special diets wouldn't be appropriate for her, at the mo our main aim is to get the calories into her but with her fussiness and throwing up its hard as it is.

Hopefully will see the GP but in terms of therapy etc so far we are having good support

 

[Kissel]

Special diets wouldn't be appropriate for her, at the mo our main aim is to get the calories into her but with her fussiness and throwing up its hard as it is.

Hopefully will see the GP but in terms of therapy etc so far we are having good support

If she is fussy with eating and having trouble keeping down food...have you asked or been given any information about gastroesophogeal reflux? There may be some stomach acid escaping and causing pain. I mentioned diets because I have worked with families that deny their children certain foods and put them on dangerous "medical therapies" without consulting doctors. It scares me and can lead to worse problems down the road.

I am glad that you are feeling supported! There is nothing worse than feeling alone with all of your worries!

 

[AP]

Once upon a time it was thought she had reflux, but after 3 years and exhausting every medication available , it seems it's more to do with her, rather than reflux. She's going for a video scan to see how her body reacts to different textures.

 

[AP]

Just thought I would update, DH mentioned to her speech therapist that were going to see the doc.

So instead, the ST has referred her to a hospital doc and a big speech therapist for assessment instead. so thats helpful. She thinks it isnt autism,(but refered her anyways ) but others arent so sure.

i just want her to have the correct support. That's it. A diagnosis wouldnt change anything, I've dealt with the worst.

 

[Tiff]

I'm glad you are getting somewhere with your stuff. We're going through the same... like 98% of all of her support system workers (Speech & Language Pathologist, Occupational Therapist, Psychologist and Resource Teachers) all think its Autism but man... to get the diagnosis it is hard!

Any chance, did they refer you to do the ADOS test? We're on a waitlist for that right now ourselves.

We need the diagnosis to get her funding for therapy as we don't have the money to do it privately. Will a diagnosis help you guys in that way as well?

Thinking of you!

 

[AP]

From what the home learning support said, she said the help wouldnt change - but i suspect thats not the case.

It would give me grounds when explaining to others though. I mean, right now its a case of "We don't know why - prematurity? Her brain damage?" and no-one knows just how to address that ykwim?

Do you find more issues because she's a girl? I find people dismissive just on that fact.

Shes coming along in her fine motor skills though - so much so she managed a thing for 4 years olds with the occupational therapist the other week. There are some little things she really excels at, ie - the iphone. It always floors people when they see her with it, she knows exactly whats shes doing and understand things like search bars

 

[Tiff]

I find that there is a massive difference between how girls and boys with ASD are treated. People are more ready to believe that a boy has ASD because stereotypically saying boys are rough, rowdy, outgoing and boisterous... so its caught quicker than with girls.

She hasn't had any sort of OT yet We can't afford to do it privately. She's on a waitlist for speech - but probably won't be picked up on that until later in the year. Its such a frustrating and upsetting time.

We have our pediatrician appt today - while I would love to think that we'll get a diagnosis today the pessimist in me is like "yeah. right." and we'll have yet another couple of months of testing etc.

So frustrating.

 

[AP]

Yep! I know exactly where you are coming from. I just don't hold out hope anymore, promises and waiting lists

 

[indy and lara]

Glad someone is listening though Sandi. Have found Edinburgh pretty good on ASD diagnosis. Sure that you know there is a nursery intervention team who are ace. They give so much help and advice to both parents and schools- have helped me no end tbh at work. It is probably true that not much would necessarily change re hours of support etc. Has she been allocated hours for starting her ante- pre year? Most of our kids with a diagnosis in nursery only get a few hours support, if any. Only once has a child with 1 to 1 support. But, the difference tends to be when P1 comes round and everyone can fight for more hours.

 

[AP]

Ive been told alex will be allocated a staff member and will also have an extra body in to watch her(the nursery have applied for this) - apparantly this person wont communicate or get involved with alex but simpily be there to assess her? Do you have any idea what this is i&l

xxx

 

[indy and lara]

Hmm not heard of that one. Will asj my pal when she gets back from holiday!!

 

[AP]

Thanks Hun. I hear everything second hand now too with me being at work :/ do it's whatever DH tells me now

 

[Aunty E]

In October, Imogen will be assessed at nursery - they want to give her a month to see how she settles in first, and then do an assessment in situ to decide whether or not to refer her on for more detailed assessment. Is that perhaps what's going to happen?

 

[Marleysgirl]

Just to update my post in this thread ...

Andrew's PsSNS worker and his Paediatrician came to visit two weeks ago. They are referring him for testing for Autism.

 

[AP]

Seems like we have quite a bit in common right now Marleysgirl. Let me know how you get on ((hugs))

 

[Midnight_Fairy]

good luck all of you x

 

[Menelly]

I hate to say it, but the problem is she's female. It's REALLY HARD to get people to diagnose girls.

https://www.guardian.co.uk/society/2012/jul/13/girls-autism-sex-bias-children

I'm not sure why the bias, except perhaps we're natively more social than boys are? Or because the literature says it's a boy problem, doctors start looking everywhere BUT autism first?

Not sure... but keep trying for an accurate diagnosis for her. I know my life, and lots of pieces within it, suddenly got much clearer once I knew what the real issue was. I'd spent most of my life thinking I was just broken and crazy before.

 

[Midnight_Fairy]

I go to/help run a ASD support group and out of 40 of us parents only 2 have females with AS xx

 

[Tiff]

Yep. Its my biggest fear with Claire taking her ADOS in 2 months.

I had came across this link and bookmarked it as it was really informative .

Have you gotten any news or anything yet? Where are you in the process of trying to find out?

 

[AP]

Me - well I am lost to be honest, just trying to tick the boxes off. :/