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



## AP

We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.

I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting :shrug:

She told me I should visit my GP, what on earth do I say? And what will they do?

I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should


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## Creative

How old is Alex?
When My eldest was 18months, I realised he had special needs. I suspected autism. He also had delayed speech.
I kept telling the HV and GO and ended up getting thought of as a over reactive parent.
I was lucky that I had contacts at the local hospital where I'd trained and so I wrote to the head of paediatric special needs and asked him to see my son. He agreed and after meeting Joe, he wrote to the GP and asked for a formal referral.
It was still a fight to get things done and Joe saw audiologists, speech therapists, dieticians and enuresis specialists. It was all a mishmash by the time he started school and they just ignored his issues.
We took him for a dyslexia assessment at 7 and luckily he was assessed by a educational psychologist who confirmed the dyslexia and also gave us the diagnosis we'd looked for for so long. Joe has aspergers, dyslexia and sematic pragmatic disorder.
At that stage I was considering home educating as the school were not interested. 
We moved back to Yorkshire ad from that point Joe made progress. he was given in class support and learnt in his own style with the heklp and recognition of the school LEA etc. He was statemented within two months of starting the new school.
His learning path has been hard, has relied on lots of parental input, but he left senior school two years ago with o and a levels and has nearly finished a two year lab technician apprenticeship. 

Your best bet for missing out all the hassle of the early years is to contact your education authority and ask about getting assessed for statement as once the money is in place, the school can provide the help and support needed.


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## Midnight_Fairy

Hiya, 

It does seem to also be a postcode lottery too :(

My son was 2yrs 9mths when I went to GP. I actually went via portage, have you heard of them? (they are amazing). I then said my concerns in a appt and they sent a refural to a peadiactrican. We saw the pead every 6ish mths for about 2 yrs, when my son was 4 we finally had a refural for a ADOS autism assement. When he was 5, he was diagnosed. 

I will say that having a diagnosis didnt really change the help he gets at school and it does not automaticly mean a statement :(


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## AP

Midnight_Fairy I read an old post of your that mentioned portage. What is it? I'm in Scotland, (if that makes any difference)

You're right though, Alex is getting probably the same help she would if she had been diagnosed, but im no expert I guess. I'm scared people will drag their feet - it seems Alex is the last of her preemie group to get help, when she was one of the ones that had the biggest issues.


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## Midnight_Fairy

Just keep on at them and communicate via letter so everything is tracked and dated.

Portage come in and help with 1:1 help and stuff but I dont know if they cover Scotland, you could always google and contact them. Worth a try?

I didnt really have anyone on my side, they all thought I was being OTT at first so please dont worry if you feel like this and also keep a diary, cant stress that enough x


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## AP

I just had a look at portage, its actually very very similar to what the preschool visiting team do, and who I spoke to today. x


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## BabyJ'sMummy

AtomicPink said:


> I just had a look at portage, its actually very very similar to what the preschool visiting team do, and who I spoke to today. x

I'm in scotland, whereabouts are you? We don't have Portage in Scotland. In my area they don't diagnose until at least three but they start the assessment process and then when they reach three are referred for diagnosis to the diagnostic team (obviously this is if they suspect ASD). I'm in Renfrewshire. DS is getting assessed at the moment and I've been told that diagnosis or not he will get all the help he needs regarding early intervention. Either get a referral from your GP or Health Visitor. xx


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## Peanut78

AtomicPink said:


> We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.
> 
> I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting :shrug:
> 
> She told me I should visit my GP, what on earth do I say? And what will they do?
> 
> I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should

I'm not currently in the UK. We were in South Africa at the time my son's condition was diagnosed. We were referred to a paediatric neurologist by the paediatrician on the basis of "global developmental delay". They then found his condition on an MRI. Having a known condition has made a big difference for us in terms of opening doors for the services he needs. We are in a private system, so it is different thou. The fact that we know what his condition is and what is causing his delays, makes it easier for the therapists to tailor a programme for his needs as well. 

Your daughter had a brain bleed after birth right, with that in mind surely your GP would refer you for help... :shrug: 

:hugs::hugs::hugs:


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## Marleysgirl

We don't have Portage in some areas of England either! I think they set up where the local authority doesn't provide suitable pre-school care. So here in Manchester, Andrew is under the care of the "pre-schools special needs service" run by the Council; a mile down the road, Sherry's girl Millie is under Portage. Comparing notes, it sounds as though both provide similar support services.

I'm sorry that you feel Alex is the last to get any help, AP :( I can't remember how Sherry came to find Portage; but I do remember that Andrew's referral to the PsSNS was as a result of his epilepsy in his first year, the epilepsy nurse was worried that his development would be delayed until the epilepsy got sorted so she arranged our referral ASAP (as it was, the epilepsy was cured quickly). 

I occasionally wonder whether Andrew is showing autistic traits, and running some of his behaviour through various online tests, it would appear he does ... But to our mind, he's got enough labels already (hearing loss, developmental delay, small-for-age, dietary challenged ... hey, let's add 'paediatric developmental flat-footed' seeing as he's now under a podiatrist too!) so I'm not inclined to add autism to that just yet.

Does Scotland have a similar assessment scheme to us? (the Statutory Assessment of SEN) I've just fought - and won - to get Andrew's assessment started now rather than waiting until he reaches school age.


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## indy and lara

Sandi, the Early Intervention team in Edinburgh are just brilliant. I cannot tell you how much help I have had at work from them. There are children diagnosed pre 3 in Edinburgh as we have had quite a few kids into Nursery with a diagnosis. They usually work with school and home to make sure we are all on the same page and all using the same systems. While it won't necessarily change the support you have at home it will change the help Alex gets at Nursery and into school. If a diagnosis is appropriate then I would suggest to you it is vital to have before P1 as without it, due to the state of the budgets in the Education Dept just now, Alex would be struggling to get any hours allocated at all. You know where I am. Not back to work until August but plenty people I can ask for you.
x


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## AP

L, that's reassuring. I'll be in touch.

The head teacher popped by yesterday and met Alex (I was impressed she decided to come up personally!) and will arrange a meeting with all of her therapists (speech and all the rest) and work out Alex's needs.

I'm scared to go to the docs, apart from one in particular, they palm me off for everything. And getting an appointment is like a Willy wonka ticket.:rofl: by the time they give me my pill I'll have given birth to baby #3 :rofl:


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## Tiff

I totally understand hunny. We're going through the motions right now, but there's a crazy long wait list! :( 

We decided to go privately as we KNOW something is up with her. We have Resource Teachers, Occupational Therapists, Speech/Language Pathologists and one psychologist who all say the same thing. Now I have a roadblock because the other frickin' psychologist refuses to see her to diagnose her. Because she's "too young". FFS she's 3.5!!!! 

One thing that was said to me is that you gotta fight for your kiddo. No one else will, and I'm seeing it firsthand right now. :nope:


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## AP

A charity worker who helped me of late said the same. It's unfair :(

I went to the docs (for myself) and briefly mentioned I'd be popping up with Alex. I managed to get 1 doc whos nice, and she said this would be fine


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## JASMAK

I would simply ask for a referral for a pediatrician. Hugs x x. My daughter was diagnosed at 2 years, 10mths....but her first 'appoinment' was 18 months. Its a hard, trying road to diagnosis, and almost a relief to just have the diagnosis and just be on with things. I am here if you need me!


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## Lottie86

I know certainly up here it's not something they like to diagnose _at all _and the only toddlers I know who have been diagnosed were severely autistic.

Findlay has an awful lot of traits of an ASD (to the point that I have had other Mums of children who have been diagnosed asking me how old F was when he was diagnosed!:dohh:) but yet his development consultant and all his other therapists have never mentioned anything at all. 

The other thing to remember is that some of the 'traits' of autism are just normal toddler behaviour and it is only if they carry on well past the normal age range that it starts to be looked at as a possible problem.


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## faun

I took Billy to the GP after the health visitor told me she suspected he has ASD traits and needs a specialist peadiatirc review. The GP just gave him a box of toys and watched him for 10 mins then told me he agrees with the health visitor and sent a referal letter for me. I got a reply saying i had been added to the list and to expect an appointment in october!


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## vixxen

May i ask how many of you babies have been premature?, my oldest has a diagnosis of ASD and ADHD and my younger son is going through the system to get diagnosed now.( not premature both 8/9 when problems became really noticable by others)
The reason is as this one is expected to come prematurely as blood and oxygen flow is compromised , and i know there is quite a link with being early and ASD how likely it really is. 
Oh and how early did you notice symptoms, i noticed when they was around 3 that they were different but could get no help or support until they was older.


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## AP

There is certainly an increased likelihood if you have a premature baby. Consultants told me that. 
Alex was a 27weeker but had a ivh due to lack of oxygen so it's hard to tell what is causing what :/


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## Aunty E

We're skirting round the edges of a ASD diagnosis with Imogen at the moment. For us, it's coming through speech therapy, which we asked for through our health visitor. Imogen was starved of oxygen during her delivery, but came out in fairly good nick and was only in SCBU for a day. She's hit every milestone late, apart from smiling :) I still think a lot of herr behaviour is just 'her' if you know what I mean, and I am suspicious about a hearing loss.


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## Kissel

AtomicPink said:


> We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.
> 
> I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting :shrug:
> 
> She told me I should visit my GP, what on earth do I say? And what will they do?
> 
> I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should

I am in America, so I know this could be different from your healthcare system. I am a behavioral therapist who works with children with ASD/developmental disabilities. If a child gets diagnosed they are eligible for government funded behavior therapy. We have had many families bounce from pediatricians to developmental psychologists. Child psychologists tend to issue the ASD diagnosis in this area and some are much more lenient with diagnoses. I have not heard of a GP/family doctor making the diagnoses. They don't seem to know what to do with children diagnosed with ASD. Ask for a referral to a child psychologist or developmental psychologist. You can always look for a second opinion and your GP should not give you grief over it. 

Next, look for a BCBA in your area that does behavior therapy called early intervention. If you get adequate services soon enough then your child can "catch up" (developmentally) to peers in the same age group. It is certainly not unheard of to have a child receive early intervention and no longer require any services by the time they reach elementary school. They "grow out" of their diagnosis sometimes. It is not a guarantee and it does require work on your part, but it certainly does work over time. PLEASE avoid vitamin therapy, anything pertaining to chelation, and any special diet that your doctor does not tell you to follow. They will not work and your child can incur serious physical harm!!! :dohh:

Good luck finding a psychologist and getting some help. Patience, patience, patience! :)


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## 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


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## Kissel

AtomicPink said:


> 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! :hugs: There is nothing worse than feeling alone with all of your worries!


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## 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.


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## 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. :thumbup: so thats helpful. She thinks it isnt autism,(but refered her anyways :dohh:) 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.


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## Tiff

:hugs: 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? :hugs:

Thinking of you! <3


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## 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. :shrug:

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 :wacko:


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## 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. :nope: 

So frustrating.


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## AP

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


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## 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.


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## 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


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## indy and lara

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


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## AP

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


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## 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?


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## 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.


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## AP

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


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## Midnight_Fairy

good luck all of you x


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## 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.


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## 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


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## Tiff

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

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? :hugs:


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## AP

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


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## Tiff

It can be a confusing process for sure. What boxes are you trying to tick off? Massive hugs, its hell in a handbasket trying to go through this.

Feeling really low today, we were together with my nephew yesterday and while I know (especially at this age) that 6 months is a MASSIVE difference between the two, how advanced he is in his speech and coming up to me and my hubby and giving us proper eye contact, telling us stories about what he's done for the past couple of weeks etc. There's no WAY Claire would do that. :( 

We don't see my nephew that often, but he was like that back at Christmas too (which would have put him at 3.5, same age that Claire is now) and it breaks my heart that she can't do that too. Although it doesn't seem to bother HER that she can't do it, she's quite content to always be on the sidelines and observing everyone else. 

Like she's a part of the world but not IN the world. :(

Sucks too because I can't friggin' talk about it with anyone. All I get when I voice my frustrations or upsets is people being so quick to defend Claire. Which is awesome, but I'm not trying to sell her out or anything, or try and highlight the fact that she has difficulties... but as her Mom it is DAMN HARD to sit back and watch how different she is to other kids. :( 

Or the people who tell me that Claire is fine because they see her on a good day. :dohh:


Sorry to totally hijack your thread, just feeling really sad and lonely about this morning.


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## AP

Did you just invade my mind? :shock:


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## Midnight_Fairy

hugs xxx

It can be hard, do you have a ASD support group or network? Mine has been my lifeline as can all meet and its not like a competition. 

If you want to ask about the ADOS fire away, my son was 5yrs 5mths at his and I have all his IQ score and results if you want a nosey x


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## Tiff

Wasn't sure who you were aiming that at MF - but if you don't mind I'd love to have a nosy at your son's ADOS. :flower: I would like to know what to expect! 

:hugs: Sandi - I totally get it, it friggin sucks. :( 

In my most selfish and awful places of my mind there are times where I want her to have some sort of delay. I'm so freaking terrified that the reason why she's behind is because I'm some sort of shitty parent. I can't explain how often I feel like she deserves someone better than me as her mother.

Which I know is silly and whatnot. :blush:


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## Midnight_Fairy

aimed at both of you :)

When I get paperwork sorted from old house at weekend il scan it in and pm you and then email to you. I had a friend online send me parts of hers and it really helped me understand what to expect rather then the "unknown" xx


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## AP

Thank you MF, I think we'd both really appreciate that, very kind of you!!!


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## AP

No Tiff I totally get you. I sometimes think ppl think I'm a lazy arse of a parent an that's why things are this way. It's only when I see the medical professionals and they always say "you do SO much for Alex, I don't know how you all do it" that makes me feel any better


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## Tiff

Thank you MF, that is super sweet of you. I greatly appreciate it! :hugs:

Sandi - I'm glad I'm not the only one. We've been told to join the Autism Ontario foundation etc and get to know more families... but if I'm honest I don't want to do that until we get an actual diagnosis. I feel like a fraud even posting in this Special Needs board but until she gets a diagnosis its hard to say.

Because of how tricky it is to diagnose a girl I'm terrified that I'm going to be told that there's something "up" with her but they don't know what it is and we're just going to have to wait. :(

The only reason why I actually post on this board because there is a definitely delay in Claire. If its Autism that's the culprit or something else time will tell. :shrug: In my heart of hearts I definitely think Autism.

Just dunno what to do if she scores normal on the ADOS. :shrug: I know one of the things is a birthday party (friend told me) and if she had had her ADOS a year ago there's no way she would have understood what a birthday party was. Even at her 3rd birthday party she let all the other kids open her gifts and just hung out on the edges. Its only recently that she's actually started to piece together what a birthday party is.

Do I say that to the testers? :shrug:


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## JASMAK

Tiff said:


> It can be a confusing process for sure. What boxes are you trying to tick off? Massive hugs, its hell in a handbasket trying to go through this.
> 
> Feeling really low today, we were together with my nephew yesterday and while I know (especially at this age) that 6 months is a MASSIVE difference between the two, how advanced he is in his speech and coming up to me and my hubby and giving us proper eye contact, telling us stories about what he's done for the past couple of weeks etc. There's no WAY Claire would do that. :(
> 
> We don't see my nephew that often, but he was like that back at Christmas too (which would have put him at 3.5, same age that Claire is now) and it breaks my heart that she can't do that too. Although it doesn't seem to bother HER that she can't do it, she's quite content to always be on the sidelines and observing everyone else.
> 
> Like she's a part of the world but not IN the world. :(
> 
> Sucks too because I can't friggin' talk about it with anyone. All I get when I voice my frustrations or upsets is people being so quick to defend Claire. Which is awesome, but I'm not trying to sell her out or anything, or try and highlight the fact that she has difficulties... but as her Mom it is DAMN HARD to sit back and watch how different she is to other kids. :(
> 
> Or the people who tell me that Claire is fine because they see her on a good day. :dohh:
> 
> 
> Sorry to totally hijack your thread, just feeling really sad and lonely about this morning.

Ohhh hon, I had to comment on this because this is me. My twin sister has a daughter 8 months older than Makena...you know how hard it was to hear how perfect her daughter was all the time! Honestly, it hurt so bad, it felt like my sister was bragging on purpose!!! But, my daughter is BRILLIANT at school (thanks to her therapies) and her daughter FAILED grade 1. I feel bad for her daughter, for sure, but part of me was like....yeah, you want to hear Makena's school grades AGAIN!?! Don't worry...I didn't. This is one of the hardest parts of having a child with a developmental delay....when you hear and see those deays compared to other children. :hugs:


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## JASMAK

Tiff said:


> Thank you MF, that is super sweet of you. I greatly appreciate it! :hugs:
> 
> Sandi - I'm glad I'm not the only one. We've been told to join the Autism Ontario foundation etc and get to know more families... but if I'm honest I don't want to do that until we get an actual diagnosis. I feel like a fraud even posting in this Special Needs board but until she gets a diagnosis its hard to say.
> 
> *Because of how tricky it is to diagnose a girl I'm terrified that I'm going to be told that there's something "up" with her but they don't know what it is and we're just going to have to wait. * :(
> 
> The only reason why I actually post on this board because there is a definitely delay in Claire. If its Autism that's the culprit or something else time will tell. :shrug: In my heart of hearts I definitely think Autism.
> 
> Just dunno what to do if she scores normal on the ADOS. :shrug: I know one of the things is a birthday party (friend told me) and if she had had her ADOS a year ago there's no way she would have understood what a birthday party was. Even at her 3rd birthday party she let all the other kids open her gifts and just hung out on the edges. Its only recently that she's actually started to piece together what a birthday party is.
> 
> Do I say that to the testers? :shrug:

My daughter has ASD and she had no problems gettin diagnosed...I know several girls with ASD n fact...also in Canada. xo


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## Tiff

Out of the 4 other Moms I have met and befriended, 3 of them have girls too. But their kids were diagnosed so much younger than Claire was... I guess that's why I worry so much. Well that and I am a massive worrier when it comes to this stuff. I swear I'm gonna be a full out mess come the week before her test!

We NEED the diagnosis so badly, we can't afford to pay for her OT out of pocket/privately. No diagnosis means no therapy which means I will probably have a nervous breakdown. :cry: 

I know I'm being crazy pessimistic, and I'm driving myself crazy. Hopefully in 3 months when we hear the results of her ADOS I'll finally be able to breathe again. :blush: And I'm SO sorry about feeling that way with Makena... I totally understand. Its not like you are happy that her daughter failed because obviously you love her, but its nice when people who are holier than thou get taken down a notch. :blush:

I know, I'm awful. :blush:


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## JASMAK

I was a mess too...I was at the point where the diagnosis was such a friggin relief! No one can afford the therapies, but there is other perks too...so, if she gets that diagnosis...there is still work involved....but, worth it when its all sorted. I stress too...it was the diagnosis...which took 10 mnths...then the therapies, then her preschool, then school was a right friggen mess in kindergarten....now I stress about friends/school/teachers....her future.....its just the way it is. Hugs x. I have some good websites for after diagnosis....so message me when you are ready. Be gentle on yourself.


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## Midnight_Fairy

The girls with asd that I know were all diagnosed before 7 xx

I didnt realise OT therapy was so expensive in america, we went private as it was more tailored to my son and she specialised in autism and dyspraxia. It cost us £150 for assessment and then £25 for each hour session after. We learnt my sons vestibular-system was very out of balance and ways to help this. 

I hope you manage to get some answers soon, it can be a very hard journey, especially when you are left waiting for answers xx


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## Tiff

It would be free if we got a diagnosis. Or whatever money we put out we'd get reimbursed. 

To do privately, it'd be $700 just for the initial assessment. $250 each for her gross and fine motor skills assessment, the private OT will do food stuff as well but that isn't an issue for us. 

Then its $140 an hour. :wacko: 

Sandi, I'm so sorry I keep hijacking your thread. :( We should have a support chat thread or something! :haha:


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## AP

Feel free Tiff, I'm learning stuff here!


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## JASMAK

Tiff said:


> It would be free if we got a diagnosis. Or whatever money we put out we'd get reimbursed.
> 
> To do privately, it'd be $700 just for the initial assessment. $250 each for her gross and fine motor skills assessment, the private OT will do food stuff as well but that isn't an issue for us.
> 
> Then its $140 an hour. :wacko:
> 
> Sandi, I'm so sorry I keep hijacking your thread. :( We should have a support chat thread or something! :haha:

We got $6K a year until she turned 6. Now we get $4K??? We never use it all. Basically, you hire whoever...someone to train (Behaviour Analyst) and behaviour interventionists, who are like teachers. They fill out the government paerwork to get paid mobthly...you sign and have to allocate the $ to who and how much. You can do that for speech an OT too. I worked on speech primarily, because M was nonverbal. But, we did hat on the side of her regular BI therapies...where they worked on a bit of verything, including toileting, speech, writing, reading, vocabulary, etc. you can also use a portion of your $ for training and apprved equipment/toys for therapies. Getting all this into place takes alot of ongoing work. If you ever need help, let me know. There is alo a bunch of dissability paper work hat you should do right away for tax credits and monhly dissability benefits.


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## Midnight_Fairy

Things my son have benefited from include: trampolines, horse riding (specialist disibilty lessons) swimming lessons (1:1) and climbing, all have helped calm him down.

I was also told drinking from a straw helps balance the vestibular system so now after school first thing we do is get him a smoothie and straw before we chat else he goes into meltdown lol. It works if they are getting irate.


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## Tiff

Thank you Jasmak! I wonder if that's the same as the UCB that stops once they turn 6 as well? Ugh, I so want OT for her. She can't handle transitions to anything, bed, someone else's house etc. She'll be okay if we heavily prep her for the change, but if something happens spur of the moment (life does that!) she loses her marbles.

It took her 8 months of weekly Resource Teacher playgroups for her to be okay enough when I left her there. :( Poor thing would scream her head off.

MF - That's really interesting! Claire has a massive oral thing (for lack of a better word), she's always putting stuff in her mouth. I always thought that would end at the toddler stage but I have to watch her like a hawk and make sure she doesn't eat whatever it is she has in her hands. :wacko:

Ugh!!! Just today she had a chunk of her hair in her mouth, and she literally chewed off a big piece of it and tried to eat it! NO idea why she sucks/eats her hair, she'll frantically pull in it to try and soothe herself or she'll suck on a piece and eat it. :sick: 

I was told OT would help with that as well, give her other ways to regulate herself. Ugh, I don't want to wait any longer! :(


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## Marleysgirl

Everything goes in my son's mouth too - except food! He refuses to self-feed and will only eat one flavour of pouch. But non-food goes into his mouth or gets licked no problems.

We recently got him to lick chocolate. That was a fantastic step, even if he then dropped it on the floor.


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## AP

Right I am back from an OT and speech appointment, the ladies have been assessing her development for a while. 

DH brought up the autism referral again. The ST started by saying she felt Alex had some traits but from whats shes seen and compared to other children, she doesnt feel its the case, but will still write up a report and refer her. I stopped her, and told her "I get the fact thats she's a girl, and it's different right?" She agreed. We went on to discuss alexs throwing up, in detail and I found she began to reassess her opinion, I could tell with the questions she was asking about her eating habits and fussiness, and how she plays with food and refuses things.

This will be a fight , i know. I told her about the recent headbutting, she headbutts doors, walls, so hard, randomly, and pinches people.

I am sick of people trying to make out this is normal, it was fine when i didnt know any other way but I have Tori now and I see the great difference.

They seem to have it in their heads alex is a social girl, when in fact she hides in cupboards, bedrooms , corners and under duvets from everyone, barely acknowledges kids when we are out.


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## Tiff

Good on you for pushing it! :hugs: 

Where are they going to refer her to? Developmental Pediatrician? I'm not sure how the process is over there as it is here. :hugs:


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## AP

Its apparantly a communication unit with the local childrens hospital


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## Tiff

I would totally do some research on it. Google the name etc, find reviews, is there any way to get in touch with parents who's children have already gone through this? I've found that's been the biggest saving grace for me. 

Small Update from me:

Talked with the head of the Resource Teacher program today, she came in after hearing me and another Mom talk about my fears with the ADOS etc (Claire was at her weekly Resource Teacher play group). 

She said that she's done quite a few ADOS tests, so much in fact that now they can see a kiddo and accurately guess what range they will score on their ADOS. Then when the results come in sure enough kiddo places where they think they will. She said she has no doubt that Claire will score Autistic on the ADOS test.

Also that I should have some faith in the test, its very "strong" and has ways of flushing out the behaviours in a kiddo even if they are having a good day at the time. 

I hope she's right. 2 more months and we'll be at our appointment!


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## Midnight_Fairy

My son didnt present very stereotype autism at his ADOS, he was in a right good mood for most of the assessments and he still got diagnosed, I was thinking they would think I was making it all up :( 

Stuff noted was his echolalia, slight flapping, minimal but some eye contact. x


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## JASMAK

Tiff said:


> Thank you Jasmak! I wonder if that's the same as the UCB that stops once they turn 6 as well? Ugh, I so want OT for her. She can't handle transitions to anything, bed, someone else's house etc. She'll be okay if we heavily prep her for the change, but if something happens spur of the moment (life does that!) she loses her marbles.
> 
> It took her 8 months of weekly Resource Teacher playgroups for her to be okay enough when I left her there. :( Poor thing would scream her head off.
> 
> MF - That's really interesting! Claire has a massive oral thing (for lack of a better word), she's always putting stuff in her mouth. I always thought that would end at the toddler stage but I have to watch her like a hawk and make sure she doesn't eat whatever it is she has in her hands. :wacko:
> 
> Ugh!!! Just today she had a chunk of her hair in her mouth, and she literally chewed off a big piece of it and tried to eat it! NO idea why she sucks/eats her hair, she'll frantically pull in it to try and soothe herself or she'll suck on a piece and eat it. :sick:
> 
> I was told OT would help with that as well, give her other ways to regulate herself. Ugh, I don't want to wait any longer! :(


Makena eats her hair and clothing. I laugh, but its gross....and annoying


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