ASD diagnosis - why such a lengthy process?

[xxLeighxx]

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! 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

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

 

[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

Do you think the private assessment was worth it? That's def not cheap 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

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

 

[BabyJ'sMummy]

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 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

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

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

 

[JASMAK]

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! 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

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

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

 

[Tiff]

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! 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

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

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

Well said!!!

 

[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

 

[BabyJ'sMummy]

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

 

[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

 

[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 sorry for rant just a little frustrated with it all.

 

[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

 

[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

 

[vixxen]

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
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 they don't believe you.

 

[xxLeighxx]

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
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 they don't believe you.

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

 

[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.



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.

 

[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

 

[xxLeighxx]

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.



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

 

[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!

 

[Midnight_Fairy]

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

 

[xxLeighxx]

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

 

[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