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Old 30 Sep 20, 06:56 PM  
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#11
Life is a beach
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My daughter is 12, she is undiagnosed as we were ignored by our GP when she was little and she learned to ‘fit in’ with other kids, we finally accessed CAMH’s more than 3 years ago and they agreed and sent us to neuro where we waited 2 more years to be seen, by this time she was 11 and would not take part in the assessment process as she didn’t want a label ( she doesn’t eat meat but isn’t vegetarian! ) we are able to access the help as if she is diagnosed as the nuero team can see it but without interaction from her they can’t rubber stamp our paperwork!

Getting a diagnosis while the child is younger and doesn’t know seems to work better as when they are older, being ‘different’ isn’t a good thing.

Good luck with your journey, it’s a long haul and please don’t pin all your hopes on the ending as it may turn out slightly different as it did for us x
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Old 30 Sep 20, 07:01 PM  
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Hi yes,my son is 14 and was screened at 5 where they said he didn't tick enough boxes ! Even though it was very clear he was ASD ! ... fast forward to aged 12 and a full diagnosis was given unanimously by a panel as my son couldn't tolerate the screening ... hes now in an Independent specialist school for high functioning Autistic children and thriving ... with the right strategies hes now doing so well .its just a shame it took so long for the diagnosis when it was very obvious to everyone ...
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Old 30 Sep 20, 08:00 PM  
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DD has just been through assessment process, which said she didnt have autism. This is despite 2 x very experienced paediatricians, associate specialist, registrars all agreeing that she did, and had pressed me to get assessment. The panel was a speech therapist and some clinical nurse. DD also has a genetic condition which very often gives autistic tendencies. She also attends a special school. Complete waste of time for DD as she already accesses maximum help and support. I wish i had done it earlier or not at all, as she is very good at masking symptoms. It is one of those things that is best done as early as possible.

Good luck with your journey. It takes a long time and can be emotionally draining. X
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Old 30 Sep 20, 08:59 PM  
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My daughter is 7 now. She was diagnosed with ASD (PDA) in November at the age of 6. I’ve been fighting for someone to help her since she was about 12 months old. She barely sleeps, has violent meltdowns and takes horrendous risks - but because she doesn’t fit the “standard” autism profile she’s been missed for years. We ended up going to Essex to the National Autistic Service for a private diagnosis. She’s finally getting more support and I’m currently fighting to get her an EHCP.
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Old 30 Sep 20, 09:33 PM  
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We are awaiting a referral for our 13 year old. It is going to take some time.
We were happy to go private but have been told by a few Doctors that they advise against it as there are many ‘charlatans’ out there and one of them said they have never had any of their tests come back without a diagnosis of ASD. My aunt is a child psychologist in Oz and advised the same.
So we must wait, and maybe wait some more it seems!
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Old 30 Sep 20, 09:38 PM  
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Alohomora
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Originally Posted by dreamadream View Post
We are awaiting a referral for our 13 year old. It is going to take some time.
We were happy to go private but have been told by a few Doctors that they advise against it as there are many ‘charlatans’ out there and one of them said they have never had any of their tests come back without a diagnosis of ASD. My aunt is a child psychologist in Oz and advised the same.
So we must wait, and maybe wait some more it seems!
Unfortunately I have heard this too. If you are prepared to pay, they will give you what you want. I know of a few children diagnosed and nothing solid has come back to the doctor 😕
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Old 30 Sep 20, 09:47 PM  
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Originally Posted by dreamadream View Post
We are awaiting a referral for our 13 year old. It is going to take some time.
We were happy to go private but have been told by a few Doctors that they advise against it as there are many ‘charlatans’ out there and one of them said they have never had any of their tests come back without a diagnosis of ASD. My aunt is a child psychologist in Oz and advised the same.
So we must wait, and maybe wait some more it seems!
This is why we went to the National Autistic Service. It’s one private place that is recognized by everyone. The GP actually referred us there.
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Old 30 Sep 20, 10:02 PM  
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Our DD (10) was diagnosed 3 years ago after a 3 year fight to have her assessed.

I always had an idea she was from an early age but between being told I was a neurotic 1st time mum, older mum or a mum who google too much... I knew in my heart she was!

I was lucky enough to have the backing of the nursery teacher (who had done various courses on autism) who had asked me while DD attended nursery if I had every heard of autism and I broke down realising that I wasn't, neurotic, crazy or go ogling too much! This nursery teacher had studied further about girls and masking in autism and had luckily written a dissertation on our DD and her traits etc and forwarded all of the info onto the team we eventually got referred to!

DD is struggling at school at the moment and I'm fighting yet again to get her the support she needs and deserves... Looks like it's going to be another long road!

Good luck 🍀

Dunx x
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Old 1 Oct 20, 07:41 AM  
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My DD was diagnosed at 5 during a MASH meeting in which the Psychologist said I thought we agreed this last year ... lots of shocked faces and then lots of excuses ! Makes no difference a year ! Still have to fight for everything and she is 14 now but has been in the best school since 9 years old and has made leaps forward and at moments a few steps back but with the multiple issues she has we are looking at a different child now . There were times when I didn’t think we would ever see the light at the end of the tunnel and that it would always be this living nightmare but things have got better and she amazes us everyday .
Hormones kicking in don’t help but it’s very hard to see what normal teenage behaviour and what is ASD at times but she is getting there .

You are your child’s biggest advocate and that can take its toll so look after yourself and try (easy to say) to have time for yourself.
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Old 1 Oct 20, 07:44 AM  
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Originally Posted by DUNXandWILL View Post
Our DD (10) was diagnosed 3 years ago after a 3 year fight to have her assessed.

I always had an idea she was from an early age but between being told I was a neurotic 1st time mum, older mum or a mum who google too much... I knew in my heart she was!

I was lucky enough to have the backing of the nursery teacher (who had done various courses on autism) who had asked me while DD attended nursery if I had every heard of autism and I broke down realising that I wasn't, neurotic, crazy or go ogling too much! This nursery teacher had studied further about girls and masking in autism and had luckily written a dissertation on our DD and her traits etc and forwarded all of the info onto the team we eventually got referred to!

DD is struggling at school at the moment and I'm fighting yet again to get her the support she needs and deserves... Looks like it's going to be another long road!

Good luck 🍀

Dunx x
They struggle to diagnose girls so often just a solid it as it takes a lot of unpicking unless very obvious! Keep fighting nd take care of yourself as well.
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