# ASD diagnosis - why such a lengthy process?



## BabyJ'sMummy

My son is showing some of the 'red flag' signs for ASD and has been referred for further assessment but it seems like it could take months to diagnose and yet everything I read says that early intervention is key. I obviously don't want someone to misdiagnose but is it quicker to go private and get assessed and can you even go private?? I'm in Scotland xx


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## nikki2512

hi i am also waiting for an appointment for my son to be assessed for aspergers we have already been to speak to someone at CAHMS,don't know if you have CAHMS in scotland ,they have now said that they think he has aspergers and they have referred us on to the asd team but have warned us it will be a lengthly process,know what you mean it is really frustrating waiting for his appointment as my son is really struggling at school and the school are saying they cannot give him much extra help until he has been statmented,can't really offer much advice but hope you get some help soon:hugs:


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## BabyJ'sMummy

nikki2512 said:


> hi i am also waiting for an appointment for my son to be assessed for aspergers we have already been to speak to someone at CAHMS,don't know if you have CAHMS in scotland ,they have now said that they think he has aspergers and they have referred us on to the asd team but have warned us it will be a lengthly process,know what you mean it is really frustrating waiting for his appointment as my son is really struggling at school and the school are saying they cannot give him much extra help until he has been statmented,can't really offer much advice but hope you get some help soon:hugs:

That's not so good, I really feel for you, my son is just going to be turning 2 so I think we're in a easier position because he hasn't hit school age yet. We have CAHMS, I think that might be the next stage after his second assessment. I had a call from the speech therapy unit today just to tell me that the waiting list is months long (which I knew) but she asked me about DS and after I told her everything she asked to see him to make sure he got a proper ASD referral (I don't think she trusts the HV). She has also put our names down for a parenting speech class that starts soon. I feel a bit more positive today, yesterday when the HV's were round I felt like they thought we were making things up but the Speech Therapist really listened. I hope your wait isn't too long :flower: xx


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## sun

The wait list is long for any help with things like speech and physio here too. And additionally they don't generally diagnose ASD quickly where I live - which I agree with. My son had his first assessment at 18 months due to lack of vocalizations (no sounds or babbling) plus he had gross motor delays - and they assessed him as having Global Developmental Delay. This is kind of a general description of the delay, but more assessments are needed over a longer period of time in order to really understand what is going on. His first assessment was almost a year ago now and he has come on really well in the past year. At 18 months they were anticipating an ASD or PDD-NOS diagnosis in the future, but now they are thinking it is something else more related to muscle tone and/or motor control function but they still aren't sure. 

I don't know what kind of support is available in the UK, but here his diagnosis of GDD made us eligible for all kinds of additional help which has been great. I also attended a class for parents about encouraging speech in toddlers with a delay and it was FANTASTIC. I think it was one of the most helpful things I did as it gave me tools to help with my son every day. It also helped me to understand how he was communicating. Speech therapy is good, but what I do with him every day makes way more of a difference. I also did signing and picture cards with him. xx


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## xxLeighxx

sun said:


> The wait list is long for any help with things like speech and physio here too. And additionally they don't generally diagnose ASD quickly where I live - which I agree with. My son had his first assessment at 18 months due to lack of vocalizations (no sounds or babbling) plus he had gross motor delays - and they assessed him as having Global Developmental Delay. This is kind of a general description of the delay, but more assessments are needed over a longer period of time in order to really understand what is going on. His first assessment was almost a year ago now and he has come on really well in the past year. At 18 months they were anticipating an ASD or PDD-NOS diagnosis in the future, but now they are thinking it is something else more related to muscle tone and/or motor control function but they still aren't sure.
> 
> I don't know what kind of support is available in the UK, but here his diagnosis of GDD made us eligible for all kinds of additional help which has been great. I also attended a class for parents about encouraging speech in toddlers with a delay and it was FANTASTIC. I think it was one of the most helpful things I did as it gave me tools to help with my son every day. It also helped me to understand how he was communicating. Speech therapy is good, but what I do with him every day makes way more of a difference. I also did signing and picture cards with him. xx

Hey girls,

SUN- your son sounds exactly like my daughter. She has said to have global developmental delap, but no real diagnosis, they say she has traits of autism but not enough to diagnose yet, she has bad coordination and delayed gross/fine motor skills. She finds it quite difficult to communicate feelings and her speech is more that of a 2-3 year old, she is 5! She is currently being statemented and she has help from LABS at school 3times a week,which is very 1-1 so she copes then, but without it she struggles a lot and is very behind with her school work I.e reading. Its frustrating that there's not more help out there. She's currently seeing SALT,OT,physio,ed psych and paed!x


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## BabyJ'sMummy

I've started trying a little bit of signing although it's hard to get him to look a lot of the time (he's not signed back yet). I like the idea of the picture cards, I remember you saying about the cereal boxes Sun but did you take any pictures of just the food in a bowl? Or is it better getting him used to the boxes/jars of jam etc? At the moment he doesn't have a way of telling me he's hungry, I just keep offering food throughout the day. xx


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## vixxen

Hi ladies my oldest child who is 11 has ASD + ADHD 2nd child may have ASD too.
From what i know it takes so long to get a diagnosis because they need a lot of evidence to build up so results of diagnosis is accurate as possible.


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## sun

BabyJ'sMummy said:


> I've started trying a little bit of signing although it's hard to get him to look a lot of the time (he's not signed back yet). I like the idea of the picture cards, I remember you saying about the cereal boxes Sun but did you take any pictures of just the food in a bowl? Or is it better getting him used to the boxes/jars of jam etc? At the moment he doesn't have a way of telling me he's hungry, I just keep offering food throughout the day. xx

We just started with the cereal boxes because one day he showed us the picture from the box out of the recycling! So he kind of gave us the idea (we hadn't heard of picture cards before that). From there we started taking pictures of his favourite things so that he could show us. Also with signing it took him a long time to sign anything back - maybe 8 months? But we started signing young. He only did one sign for a long time as well. He would only used signs that were motivating to him (help, open, more) and didn't use the signs for eat/drink until he was almost 2. He can say some words now. He still doesn't really ask for food, but he has started asking for water. We just offer throughout the day as well. xx

Leigh - She does sound similar! My LO actually has pretty good fine motor skills, but delayed gross motor and speech. His speech is improving now that they are doing some physio on the muscles of his mouth/tongue though! :D He can make many more sounds and move his mouth and eat better. For example he used to not be able to stick out his tongue and move it from side to side, but now he can. Bun is the same in regards to diagnosis though. For us it's kind of a wait and see situation. They want to do more genetic testing (they already ruled out the big ones) but I'm not sure that would really accomplish anything. xx


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## ClairHawkins

I just wanted to say I have been through this with my now 16 yo, He was in the "system since 2" and finally fot his pdd/asd/adhd/tourettes diagnosis at 11 it has been a really hard slog and he still has mh issues however is is sitting his A levels and has a gf :happydance: he is also a lovely lovely boy and we are so proud of him he is turning into a lovely young man so different from how I thought his life would be!!!!!

Just wanted to say Good luck ladies it is soooo hard and anyone that gets through it without grey hairs is lucky!!! but it is so worth it :hugs:


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## BabyJ'sMummy

ClairHawkins said:


> I just wanted to say I have been through this with my now 16 yo, He was in the "system since 2" and finally fot his pdd/asd/adhd/tourettes diagnosis at 11 it has been a really hard slog and he still has mh issues however is is sitting his A levels and has a gf :happydance: he is also a lovely lovely boy and we are so proud of him he is turning into a lovely young man so different from how I thought his life would be!!!!!
> 
> Just wanted to say Good luck ladies it is soooo hard and anyone that gets through it without grey hairs is lucky!!! but it is so worth it :hugs:

Thanks so much for your reply, that's really lovely to hear :flower:


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## JASMAK

My daughter's assessment took about 10 months and was diagnosed at almost 3 years old. They said it was a fast diagnosis!! Felt like forever! There was always people over, assessing her, plus the Child Development Centre came twic a week at least for speech and infant development (therapy). I believe it all helped, even rhe assessments, at least a little. Its waitlists, but most importantly, the various professionals need to get to know your child and do their full assessments properly for an accurate diagnosis. My daughter had Classic symptoms so it went very fast. I have heard of some others taking forever.


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## BabyJ'sMummy

JASMAK said:


> My daughter too about 10 months and was diagnosed at almost 3 years old. They said it was a fast diagnosis!! Felt like forever! There was always people over, assessing her, plus the Child Development Centre came twic a week at least for speech and infant development (therapy). I believe it all helped, even rhe assessments, at least a little. Its waitlists, but most importantly, the various professionals need to get to know your child and do their full assessments properly for an accurate diagnosis. My daughter had Classic symptoms so it went very fast. I have heard of some others taking forever.

Do you mind me asking what the symptoms were that you noticed initially? Ours have been not pointing/showing things of interest, not shaking head no or nodding yes, only responding to name sometimes, speech, no pretend play, not really interested in other children (although he showed some interest in his cousin yesterday), doesn't hold gaze for long. Sometimes I wonder if we're making too much of things but then why are there so many things that point towards it? xx

eta - He has also regressed slightly. He no longer does the actions to twinkle twinkle and has pretty much stopped waving/clapping altogether.


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## JASMAK

Yeah, what you said...no speech, no play, no eye contact, no pointing, no clapping, no communication whatsoever, just screaming and meltdowns that left us confused as to what the issue was. She didnt notice toys, presents or people.


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## Chimpette

Hi,

When it came to our boy I was told that no testing was done until after their 3rd birthday. Logan turned 3 in June and had his assessment in Oct which lasted for 3 weeks, he was then diagnosed with high functioning autism in November.

So all in all once he turned 3 it took no time at all really to get him diagnosed.


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## BabyJ'sMummy

Chimpette said:


> Hi,
> 
> When it came to our boy I was told that no testing was done until after their 3rd birthday. Logan turned 3 in June and had his assessment in Oct which lasted for 3 weeks, he was then diagnosed with high functioning autism in November.
> 
> So all in all once he turned 3 it took no time at all really to get him diagnosed.

I think they try and catch it as early as poss now so they can begin with the early intervention, I'm pretty sure they can diagnose from around 2 but are trying to get it even younger. Having said that with the amount of time it generally takes to diagnose I think a lot of children are around 3 when they are diagnosed. xx


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## Tiff

I'm in the process right now of waiting for the ADOS test to get a diagnosis for Claire. Personally I don't care about the label, more just getting her the help she needs. If she is diagnosed, it'll be high functioning for sure. 

We've been using Visual Schedules for Claire, they've been working WONDERS. :thumbup: I highly recommend them. It really takes away a lot of her anxiety when it comes to the unknown.


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## BabyJ'sMummy

Thanks Tiff, I'm glad you've found something that seems to help  I just really want to know what we're dealing with so I can find the best way to go about helping him. The one thing that has made a difference to begin with is that we have no tv on at all throughout the day. When it had been on he would sit glued to it - as in nose right up to the telly and if it wasn't on he would try for ages to get it on, we've turned it off at the plug so he can't get it on at all and he engages us a lot better. We're getting more down to his level when playing and giving him warnings of when things are happening - he would throw a tantrum if you didn't read a book over and over again but now if you tell him it's the last time he accepts it. The thing is I don't know what's normal toddler behaviour and what may be asd. xx


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## g3mz

hi my son is is 4years 4months and we have been waiting for a diagnosis since he was 18months old :( he has already had an ADOS but module 1 was used and they felt during the assesment that he needed module 2 so we have had to wait another 6 months for a module 2 ADOS. I am however very lucky as he is statemented with full time 1:1 in school. although the waiting for a formal diagnosis is very stressful!! my daughter is 7 and she has GDD but did have alot of autistic traits when she was younger but she changed as she got older, although this is not the case with my son he has been in nursery since he was 2 and has not made a single friend :( he thinks he is an adult not a child and his obbsesions can become dangerous he has in the past thrown himself down the stairs thinking he is buzz lightyear!
i hope you dont have to wait to long because i agree that early intervention is the key!
wishing you all the luck in the world :)


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## Midnight_Fairy

It took them 3 yrs to diagnose my son. My son also had a private assessment and it was 1700 for autism and speech assement and then 150 for the OT assessment. Its not cheap :(


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## BabyJ'sMummy

Midnight_Fairy said:


> It took them 3 yrs to diagnose my son. My son also had a private assessment and it was 1700 for autism and speech assement and then 150 for the OT assessment. Its not cheap :(

Do you think the private assessment was worth it? That's def not cheap :nope: I had to phone the audiologist today to find out when ds is getting his hearing test as we want to rule that out before he get his next assessment and I was told it's a 6 -8 week wait!! I explained our circumstances and she's managed to fit us in next Wed  Some people can be so kind. xx


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## xxLeighxx

sun said:


> BabyJ'sMummy said:
> 
> 
> I've started trying a little bit of signing although it's hard to get him to look a lot of the time (he's not signed back yet). I like the idea of the picture cards, I remember you saying about the cereal boxes Sun but did you take any pictures of just the food in a bowl? Or is it better getting him used to the boxes/jars of jam etc? At the moment he doesn't have a way of telling me he's hungry, I just keep offering food throughout the day. xx
> 
> We just started with the cereal boxes because one day he showed us the picture from the box out of the recycling! So he kind of gave us the idea (we hadn't heard of picture cards before that). From there we started taking pictures of his favourite things so that he could show us. Also with signing it took him a long time to sign anything back - maybe 8 months? But we started signing young. He only did one sign for a long time as well. He would only used signs that were motivating to him (help, open, more) and didn't use the signs for eat/drink until he was almost 2. He can say some words now. He still doesn't really ask for food, but he has started asking for water. We just offer throughout the day as well. xx
> 
> Leigh - She does sound similar! My LO actually has pretty good fine motor skills, but delayed gross motor and speech. His speech is improving now that they are doing some physio on the muscles of his mouth/tongue though! :D He can make many more sounds and move his mouth and eat better. For example he used to not be able to stick out his tongue and move it from side to side, but now he can. Bun is the same in regards to diagnosis though. For us it's kind of a wait and see situation. They want to do more genetic testing (they already ruled out the big ones) but I'm not sure that would really accomplish anything. xxClick to expand...

Hey Sun, my daughter had a biopsy taken for genetics and didn't find anything which is a relief!!I have a horrible feeling she won't get a diagnosis as she's a bit of this and a bit of that and has no sure signs of just one!!She has traits of autism but if she was to get diagnosed with that then it would only be mild!!her speech is improving she's now started coming out with little phrases or words herself that I've never heard her say so she's talking on her own initiative instead of just copying ppl!!she's also starting to talk in 4-5 word sentences which is brilliant for her!!she's waiting on a physio course to start to help her gross motor skills and balance!!she has hardly any strength in her tummy muscles which is impacting on the muscles on her legs,fingerscrossed we get it sorted or it could result in surgery on her legs :( this is why her diagnosis is hard cuz she has physical problems and they can't pinpoint why!!

Ladies - I'm glad I'm not alone in this, I sometimes feel like a failure because of the way she is and that somehow I couldve prevented it, I know that's not true but I find it very hard to compliment myself on being a good mum!! Until you care for a special needs child you have no idea how hard it is, it definitely moulded me into the person I am today!! It really does take a special person to care for a child with special needs :) 
I'm glad for the ladies who have got your diagnosis' so quick and hope all your children are doing well and receiving the help they need!! :) xx


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## Midnight_Fairy

BabyJ'sMummy said:


> Midnight_Fairy said:
> 
> 
> It took them 3 yrs to diagnose my son. My son also had a private assessment and it was 1700 for autism and speech assement and then 150 for the OT assessment. Its not cheap :(
> 
> Do you think the private assessment was worth it? That's def not cheap :nope: I had to phone the audiologist today to find out when ds is getting his hearing test as we want to rule that out before he get his next assessment and I was told it's a 6 -8 week wait!! I explained our circumstances and she's managed to fit us in next Wed  Some people can be so kind. xxClick to expand...

Yes because although pricy it outlines his needs and how to help them. The NHS report just says he has autism and thats that. I needed a detailed report to get my son statemented. A diagnosis will not automaticly mean school help (unfortunately) so now I have a detailed profile of my son which has helped me learn too xx I have learnt alot about the NHS and CAMHS and while helpful at a time in need they ALL work together and have guidelines of what they can and cant say x


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## BabyJ'sMummy

Midnight_Fairy said:


> BabyJ'sMummy said:
> 
> 
> 
> 
> 
> Midnight_Fairy said:
> 
> 
> It took them 3 yrs to diagnose my son. My son also had a private assessment and it was 1700 for autism and speech assement and then 150 for the OT assessment. Its not cheap :(
> 
> Do you think the private assessment was worth it? That's def not cheap :nope: I had to phone the audiologist today to find out when ds is getting his hearing test as we want to rule that out before he get his next assessment and I was told it's a 6 -8 week wait!! I explained our circumstances and she's managed to fit us in next Wed  Some people can be so kind. xxClick to expand...
> 
> Yes because although pricy it outlines his needs and how to help them. The NHS report just says he has autism and thats that. I needed a detailed report to get my son statemented. A diagnosis will not automaticly mean school help (unfortunately) so now I have a detailed profile of my son which has helped me learn too xx I have learnt alot about the NHS and CAMHS and while helpful at a time in need they ALL work together and have guidelines of what they can and cant say xClick to expand...

I take it even though it's a private diagnosis it's still recognised, as in the school will accept it even though it's not the NHS and will provide the help he needs? What does statemented mean? xx


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## JASMAK

xxLeighxx said:


> sun said:
> 
> 
> 
> 
> 
> BabyJ'sMummy said:
> 
> 
> I've started trying a little bit of signing although it's hard to get him to look a lot of the time (he's not signed back yet). I like the idea of the picture cards, I remember you saying about the cereal boxes Sun but did you take any pictures of just the food in a bowl? Or is it better getting him used to the boxes/jars of jam etc? At the moment he doesn't have a way of telling me he's hungry, I just keep offering food throughout the day. xx
> 
> We just started with the cereal boxes because one day he showed us the picture from the box out of the recycling! So he kind of gave us the idea (we hadn't heard of picture cards before that). From there we started taking pictures of his favourite things so that he could show us. Also with signing it took him a long time to sign anything back - maybe 8 months? But we started signing young. He only did one sign for a long time as well. He would only used signs that were motivating to him (help, open, more) and didn't use the signs for eat/drink until he was almost 2. He can say some words now. He still doesn't really ask for food, but he has started asking for water. We just offer throughout the day as well. xx
> 
> Leigh - She does sound similar! My LO actually has pretty good fine motor skills, but delayed gross motor and speech. His speech is improving now that they are doing some physio on the muscles of his mouth/tongue though! :D He can make many more sounds and move his mouth and eat better. For example he used to not be able to stick out his tongue and move it from side to side, but now he can. Bun is the same in regards to diagnosis though. For us it's kind of a wait and see situation. They want to do more genetic testing (they already ruled out the big ones) but I'm not sure that would really accomplish anything. xxClick to expand...
> 
> Hey Sun, my daughter had a biopsy taken for genetics and didn't find anything which is a relief!!I have a horrible feeling she won't get a diagnosis as she's a bit of this and a bit of that and has no sure signs of just one!!She has traits of autism but if she was to get diagnosed with that then it would only be mild!!her speech is improving she's now started coming out with little phrases or words herself that I've never heard her say so she's talking on her own initiative instead of just copying ppl!!she's also starting to talk in 4-5 word sentences which is brilliant for her!!she's waiting on a physio course to start to help her gross motor skills and balance!!she has hardly any strength in her tummy muscles which is impacting on the muscles on her legs,fingerscrossed we get it sorted or it could result in surgery on her legs :( this is why her diagnosis is hard cuz she has physical problems and they can't pinpoint why!!
> 
> Ladies - I'm glad I'm not alone in this, *I sometimes feel like a failure because of the way she is and that somehow I couldve prevented it, I know that's not true but I find it very hard to compliment myself on being a good mum!! *Until you care for a special needs child you have no idea how hard it is, it definitely moulded me into the person I am today!! It really does take a special person to care for a child with special needs :)
> I'm glad for the ladies who have got your diagnosis' so quick and hope all your children are doing well and receiving the help they need!! :) xxClick to expand...

I felt like that for a very long time too, and still catch myself blaming myself, but it isn't true, and it does no good either. It IS hard, but we ARE good moms, which is why God chose us. x


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## Tiff

JASMAK said:


> xxLeighxx said:
> 
> 
> 
> 
> 
> sun said:
> 
> 
> 
> 
> 
> BabyJ'sMummy said:
> 
> 
> I've started trying a little bit of signing although it's hard to get him to look a lot of the time (he's not signed back yet). I like the idea of the picture cards, I remember you saying about the cereal boxes Sun but did you take any pictures of just the food in a bowl? Or is it better getting him used to the boxes/jars of jam etc? At the moment he doesn't have a way of telling me he's hungry, I just keep offering food throughout the day. xx
> 
> We just started with the cereal boxes because one day he showed us the picture from the box out of the recycling! So he kind of gave us the idea (we hadn't heard of picture cards before that). From there we started taking pictures of his favourite things so that he could show us. Also with signing it took him a long time to sign anything back - maybe 8 months? But we started signing young. He only did one sign for a long time as well. He would only used signs that were motivating to him (help, open, more) and didn't use the signs for eat/drink until he was almost 2. He can say some words now. He still doesn't really ask for food, but he has started asking for water. We just offer throughout the day as well. xx
> 
> Leigh - She does sound similar! My LO actually has pretty good fine motor skills, but delayed gross motor and speech. His speech is improving now that they are doing some physio on the muscles of his mouth/tongue though! :D He can make many more sounds and move his mouth and eat better. For example he used to not be able to stick out his tongue and move it from side to side, but now he can. Bun is the same in regards to diagnosis though. For us it's kind of a wait and see situation. They want to do more genetic testing (they already ruled out the big ones) but I'm not sure that would really accomplish anything. xxClick to expand...
> 
> Hey Sun, my daughter had a biopsy taken for genetics and didn't find anything which is a relief!!I have a horrible feeling she won't get a diagnosis as she's a bit of this and a bit of that and has no sure signs of just one!!She has traits of autism but if she was to get diagnosed with that then it would only be mild!!her speech is improving she's now started coming out with little phrases or words herself that I've never heard her say so she's talking on her own initiative instead of just copying ppl!!she's also starting to talk in 4-5 word sentences which is brilliant for her!!she's waiting on a physio course to start to help her gross motor skills and balance!!she has hardly any strength in her tummy muscles which is impacting on the muscles on her legs,fingerscrossed we get it sorted or it could result in surgery on her legs :( this is why her diagnosis is hard cuz she has physical problems and they can't pinpoint why!!
> 
> Ladies - I'm glad I'm not alone in this, *I sometimes feel like a failure because of the way she is and that somehow I couldve prevented it, I know that's not true but I find it very hard to compliment myself on being a good mum!! *Until you care for a special needs child you have no idea how hard it is, it definitely moulded me into the person I am today!! It really does take a special person to care for a child with special needs :)
> I'm glad for the ladies who have got your diagnosis' so quick and hope all your children are doing well and receiving the help they need!! :) xxClick to expand...
> 
> I felt like that for a very long time too, and still catch myself blaming myself, but it isn't true, and it does no good either. * It IS hard, but we ARE good moms, which is why God chose us. x*Click to expand...

Well said!!! :hugs: :flower:


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## Midnight_Fairy

Yes they will accept it as long as its by registered people. My son was seen in London as someone recommended by national autistic society. He does have NHS diagnosis too but I wish I didnt bother LOL. If anything the private evaluation is worth more as its detailed. NHS is very vague and limited with what they can say. The CAMHS is also under trouble for mis diagnosis of Aspergers/Autism. 

The statement outlines what he needs at school. I thought he would automatically get help with diagnosis but nope. You need statement for special needs schools too and they are damn hard to get x


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## BabyJ'sMummy

Midnight_Fairy said:


> Yes they will accept it as long as its by registered people. My son was seen in London as someone recommended by national autistic society. He does have NHS diagnosis too but I wish I didnt bother LOL. If anything the private evaluation is worth more as its detailed. NHS is very vague and limited with what they can say. The CAMHS is also under trouble for mis diagnosis of Aspergers/Autism.
> 
> The statement outlines what he needs at school. I thought he would automatically get help with diagnosis but nope. You need statement for special needs schools too and they are damn hard to get x

Thanks for the info, that's really interesting xx


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## TaraMum

It took 7 years and a near nervous breakdown for me to get a diagnosis and appropriate support for my now 14 year old to get his ASC diagnosis (he has Aspergers) I think all you can do is just dig your heels in and be the little buzzy bee who doesn't stop buzzing in people's ears! I have always found CAMHS to be nothing but useless but unfortunately they seem to hold all the power, particularly where schooling issues are a concern (my son has not attended school for 18 months)

I actually have an appointment at the end of this week with a new CAMHS service as we have moved from Devon to Essex so I'm hoping this team will be better and more productive than the last. My son's autism assessment was done in February after a 3 year wait on the list and I'm still waiting for the full report which I *need* to show this team! But surprise surprise after 12 weeks it still hasn't arrived when I was promised it would be between 6-8 weeks. Grr!

Anyway good luck, and if you need any advice then just shout :)


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## vixxen

And schools can be next to useless they don't like statementing kids because it costs them time, extra staff and bloody money.
They tend to blame parents and say lack of boundries are causing problems.
They want to medicate kids to max and give them no therapy, as you can tell having a few probs at moment:dohh: sorry for rant just a little frustrated with it all.


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## xxLeighxx

Aaliyah is currently going through the statementing process...she has seen all the appropriate people I.e. SALT,OT,ed psych. Once she gets a statement then we can discuss schools,she is in reception at main stream atm but does find it a struggle so hopefully she should find it better in a special needs school and then see how it goes!!I'm no nearer for a diagnosis tho which is a pain :( xx


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## BabyJ'sMummy

Thanks everyone, it sounds like it's been horrendous for some of you :-( But it's really good to hear your experiences going through the system, I really appreciate it. We have DS's hearing test tomorrow and SALT assessment next week, we got the letter through to say that the SALT parent class also starts next week which is good timing. I feel a bit better because things are moving forward and the SALT will give us something to focus on. xx


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## vixxen

BabyJ'sMummy said:


> Thanks everyone, it sounds like it's been horrendous for some of you :-( But it's really good to hear your experiences going through the system, I really appreciate it. We have DS's hearing test tomorrow and SALT assessment next week, we got the letter through to say that the SALT parent class also starts next week which is good timing. I feel a bit better because things are moving forward and the SALT will give us something to focus on. xx

You have good days and then you have bad days :wacko:
Sounds as if things are progressing good for you at moment its so important they get the help earlier on its harder when they are older as people are always judging you as bad mom and your child is just naughty and lacks manners, even when you have a diagnosis:shrug: they don't believe you.


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## xxLeighxx

vixxen said:


> BabyJ'sMummy said:
> 
> 
> Thanks everyone, it sounds like it's been horrendous for some of you :-( But it's really good to hear your experiences going through the system, I really appreciate it. We have DS's hearing test tomorrow and SALT assessment next week, we got the letter through to say that the SALT parent class also starts next week which is good timing. I feel a bit better because things are moving forward and the SALT will give us something to focus on. xx
> 
> You have good days and then you have bad days :wacko:
> Sounds as if things are progressing good for you at moment its so important they get the help earlier on its harder when they are older as people are always judging you as bad mom and your child is just naughty and lacks manners, even when you have a diagnosis:shrug: they don't believe you.Click to expand...

This is so true...aaliyah is 5 but is a very tall 5 and looks older...so instead of knowing anything people look at her like she is just a brat and give me dirty looks!!it does hurt but its there ignorance and its them I feel sorry for!!we are the mothers blessed with such strong, amazing little fighters and made us who we are :) xx


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## Tiff

If I tell people that Claire is going through the testing right now they instantly say "Oh, she's fine. She doesn't have Autism". Which is true, she may not. She DOES have some issues though... whether or not they choose to label them is another story.

But these are people who have only seen her for a little bit here and there. Then all the things they tell me she doesn't do are characteristics of severely (low functioning) Autistic children. 

:shrug:

Unless they spend a LOT of time with them they won't see. My Mom was adamant that there was nothing "wrong" (her words, not mine) with Claire. But I've made a point of showing her all the things that Claire struggles with. She's actually on board now with the therapies we're going to get for Claire.


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## BabyJ'sMummy

DS had his hearing test today and he has mild hearing loss, however he has a cold which has been ongoing for ages and they found loads of fluid in his ear. They want to see him again in 6 weeks and then may refer him to ENT. They've said there is a chance that an ear infection he had months ago never really cleared up which could be causing issues. I'm even more confused than ever now, I'm trying so hard not to get my hopes up but how can you not. I don't think a hearing loss could answer all the questions we have about ds but it could answer some. I feel like I'm on a rollercoaster and just want to get to the end :-( xx


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## xxLeighxx

Tiff said:


> If I tell people that Claire is going through the testing right now they instantly say "Oh, she's fine. She doesn't have Autism". Which is true, she may not. She DOES have some issues though... whether or not they choose to label them is another story.
> 
> But these are people who have only seen her for a little bit here and there. Then all the things they tell me she doesn't do are characteristics of severely (low functioning) Autistic children.
> 
> :shrug:
> 
> Unless they spend a LOT of time with them they won't see. My Mom was adamant that there was nothing "wrong" (her words, not mine) with Claire. But I've made a point of showing her all the things that Claire struggles with. She's actually on board now with the therapies we're going to get for Claire.

Snap!!I get this all the time...people tell me 'there's nothing wrong with her...she'll catch up' these people do not go through any difficulties we have to with them!!Aaliyah is not your average 5yr old...and okay so she doesn't have severe special needs...she does still have them...she's not on the highest rate DLA for nothing!!her dads the worst (were split when she was 2) he doesn't attend any appointments and has her every other weekend and always says 'she's not thick' I hate it!!she isn't 'thick' she is bright but in her own way...everything is Aaliyahs way...I try not to compare her to 'normal' children xx


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## lizzie58

I worked in Special Needs for many years as a teacher and as a SENCo. I think the problem is often that diagnosis can be tricky because each individual is different in their needs and presentation. I also think that some professionals are nervous of 'labelling' a child too early in case they go on to need a 'secondary label'. if you see what I mean!! Sadly, in England at least, funding is also an issue!


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## Midnight_Fairy

It took my mum 2 yrs to accept my son had autism lol. Before that they all said he was fine.


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## xxLeighxx

Midnight_Fairy said:


> It took my mum 2 yrs to accept my son had autism lol. Before that they all said he was fine.

Why do people find it so hard to accept :/ I wish Aaliyah has some sort of diagnosis so I could get the correct help!! How old is your son??xx


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## vixxen

Yep i also have a mom who didn't understand lol.
It is harder for people to accept high functioning ASD because well they don't always have the learning issues just the behavior side of things and most people like to blame that on parenting:growlmad:


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## Tiff

SO true. 

I've also been doing a lot of research and another thing that's hard is how Autism is SO different in girls than it is in boys. So mother's of girl kiddos who have high-functioning ASD have it super hard!!! Not saying that mothers of boys who have high-functioning ASD have it any easier of course... but they're doing studies now to try and figure out why society is willing to accept boys with ASD but not girls.

:wacko:


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## vixxen

Tiff said:


> SO true.
> 
> I've also been doing a lot of research and another thing that's hard is how Autism is SO different in girls than it is in boys. So mother's of girl kiddos who have high-functioning ASD have it super hard!!! Not saying that mothers of boys who have high-functioning ASD have it any easier of course... but they're doing studies now to try and figure out why society is willing to accept boys with ASD but not girls.
> 
> :wacko:

I think it's just that people just don't come across many girls with ASD.
I only know of one in my circle of friends.Though i think people only know about the boys because so many parents are using ASD as there excuse for bad behavior:growlmad: makes it harder on the ones that really does have ASD.


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## JASMAK

I personally know three girls, plus my daughter with ASD, and four boys....seems pretty equal. My daughter is the most severe out of all the girls, and second most severe out of the boys and girls. I hate when people talk about high or low fnctioning, as in "what is your daughter" as it is referrin to mental ret*rdation. I get offended by it.


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## vixxen

I'm sorry if i've offended anyone as my other is suspected as having low functioning ASD so i would have one of each. His assessment is going quicker as he has learning and speech difficulties as well as behavior.


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## Midnight_Fairy

JASMAK said:


> I personally know three girls, plus my daughter with ASD, and four boys....seems pretty equal. My daughter is the most severe out of all the girls, and second most severe out of the boys and girls. I hate when people talk about high or low fnctioning, as in "what is your daughter" as it is referrin to mental ret*rdation. I get offended by it.

I must admit I hate people asking me that as if I say low they think he is stupid and he isnt. He can tell you all about the solar system etc but just has a low IQ in regards to curriculum but that's no reflection on his true intelligence. 

I also go to a support group. There are 20 regular mums and out of the 20, 5 have daughters with ASD x


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## candee2007

My daughter is 2.5 and has a severe speech delay. It is so hard not knowing when and if she is going to ever be able to talk like other kids. Then I worry if people will understand her when she does.


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## Midnight_Fairy

My son didnt talk till he was 4 hun and now he is almost 8, most people wouldnt even notice he ever had a speech delay. He can say anything now but he does not understand words if that makes sense x


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## JASMAK

Midnight_Fairy said:


> My son didnt talk till he was 4 hun and now he is almost 8, most people wouldnt even notice he ever had a speech delay. He can say anything now but he does not understand words if that makes sense x

Makena is the same!! She can say WAY more than she understands...so it is tricky. You *think* she understand something, because she will even answer, "OK" or whatever...then she won't do it. Then it can seem like she is ignoring, or acting defiant, when in actual fact, she just didn't understand.


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## R_x

what happens once you get a diagnosis? what help? and with school?

:flower:


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## Midnight_Fairy

R_x said:


> what happens once you get a diagnosis? what help? and with school?
> 
> :flower:

You are entitled help regardless of diagnosis. Diagnosis will not mean automatic statement and help or special needs school- thats a whole new fight. If your child needs support now, they should be getting it diagnosis or not x


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## Tiff

That's not the same here unfortunately. Claire is in desperate need of OT and until we get her an official diagnosis we do not get any help for her whatsoever unless we pay out of pocket for private therapy.

She has been with a few things, a Resource Teacher playgroup, P and I took the More Than Words class and she's just now being signed up for a Speech Summer Social group (which is good) but I'm not concerned about her speech. Its very delayed but it is getting better and better as the weeks go on... its her sensory stuff that debilitates her. :(

We're close to a diagnosis now though, but then it'll be another long wait for an OT. :dohh:


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## Midnight_Fairy

When I say "entitled too" I dont mean guarantee, I have had to fight for everything my son gets x
We are able to see OT's here regardless of a diagnosis but I dont find they all have much sensory experience. We ended up going private and paying for an autism trained OT who he still has weekly sessions with x


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## Tiff

Yeah, I remember you mentioning that you had to fight for everything for your boy. :( For all the spouting off talk about "early intervention" they make it next to impossible to get things done!

I have some things that I got from the OT who was a part of our More Than Words class, mainly because I was near tears after a really rough two weeks with Claire and I was at the end of my rope. 

To me if a child is having issues it shouldn't matter if they're diagnosed or not. Help the issues! I'm sure there's a bunch of legal red tape and all sorts of reports to fill out beforehand but as people on the waiting list (or people like you who had to go private) it really sucks!!!


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## Tiff

....can you tell I'm a wee bit angry at the situation? :blush:


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## Midnight_Fairy

I totally agree Tiff though, its all so wrong and all the while while they sort out the mess, our children suffer in mainstream schools :(


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## AimeeM

Midnight_Fairy said:


> R_x said:
> 
> 
> what happens once you get a diagnosis? what help? and with school?
> 
> :flower:
> 
> You are entitled help regardless of diagnosis. Diagnosis will not mean automatic statement and help or special needs school- thats a whole new fight. If your child needs support now, they should be getting it diagnosis or not xClick to expand...

Just seen your siggy, congrats!! X x


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## Midnight_Fairy

Thanks xxx


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