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

 

[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

 

[BabyJ'sMummy]

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

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 xx

 

[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

 

[xxLeighxx]

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

 

[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

 

[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.

 

[sun]

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

 

[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 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

 

[BabyJ'sMummy]

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 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

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

 

[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.

 

[BabyJ'sMummy]

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.

 

[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.

 

[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.

 

[BabyJ'sMummy]

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

 

[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. I highly recommend them. It really takes away a lot of her anxiety when it comes to the unknown.

 

[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

 

[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

 

[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

 

[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