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Wondering if my son will 'mask' too well at assessment

(12 Posts)
MollyBloomYes Wed 19-Apr-17 23:32:53

Hi

My son has his autism assessment with the community paediatrician in May. He will have just turned 3. He was referred by the HV after things were flagged up at his 2 year development review. She waited a couple of months, then carried out a questionnaire and observation review (I'm not sure what the questionnaire was called) after which she referred him. It's been seven months on the waiting list.

During this time he's had some speech therapy (I felt the speech therapist didn't really 'get' him and seemed quite inexperienced but I followed her suggestions etc). I'm a former SEN teacher so used PECS with him which has helped a lot with his communication and speech development.

He's also had a private one off OT session for sensory professing difficulties. The OT was the first person to suggest the possibility of autism.

I should state, I have no problem with him being autistic, I'll take each day as it comes etc. What I am concerned about is if he is borderline or it isn't diagnosed and he goes on to have difficulties because he can't cope with demands of school etc. Diagnosis would at least open some doors and create some statutory obligations.

I guess what I'm worried about is he is very good at mimicking others and replicating tv programmes etc. He actually reminds me an awful lot of how a girl would usually present.

This has been a bit of a ramble, sorry! I think I just would like to know what to expect at assessment and how much I will be listened to. I'm very aware of not wanting to step on any professional's toes because I have a background in SEN and don't want that to be clouding my judgement. However I do obviously know my own child and to be honest on reflection have always thought there was...something practically since birth. The difference in his interaction and behaviour in comparison to his younger brother is quite marked as well.

If anyone has managed to read this far I'd really appreciate some insight or what to expect, thanks! My experience is limited to once they've already received a diagnosis and been deemed suitable for an SEN school!

Thank you

FrayedHem Thu 20-Apr-17 02:21:10

I think if ASD assessments are done by skilled professionals they will unravel the more subtly presenting DC. My DS3's nursery were really shocked he was dx with ASD as they see no issues there at all. To be fair the environment really suits him and they're very good at naturally supporting children of varying needs.

In my area they use the ADOS as part of the ASD assessment and it picked up both my DC issues (DS1 and DS3 both have ASD) and they both engaged really well. When I'd spoken to the SALT about what would happen if DS3 didn't meet the ASD criteria (she herself described his difficulties as subtle) she said it wouldn't mean he was discharged, but they would look at monitoring and assessing again when he was older for ADHD and ASD again. As it was he was dx on the day.

PolterGoose Thu 20-Apr-17 08:27:08

I agree with Frayed that a skilled clinician will see beyond the superficial stuff. I was very surprised when the paed who assessed and diagnosed ds commented on things she could tell were not coming naturally to him.

Sometimes though there just isn't quite enough to make a confident diagnosis, particularly with verbal children who don't have an intellectual disability - some/many children skirt along the fringes of typical development until demands exceed capacity and then it all becomes more clear.

MollyBloomYes Thu 20-Apr-17 09:43:00

Thank you, that's good to hear. I don't mistrust all professionals but possibly I'm subconsciously worrying after our experience with SALT who blithely talked about discharging him as he was speaking in phrases until I pointed out he was copying the end of her sentences word for word and with her exact intonation. She had completely missed that and I had to remind her of the term echolalia because she had forgotten it confused

FrayedHem Thu 20-Apr-17 10:05:25

I can understand your concern. Was the SALT a specialist for communication disorders? Some have different areas of specialism.

I only have experience of the ADOS assessment but that picked up things like accent/intonation/learnt phrases for both DS1 and DS3 as well as the more obviously ASD stuff for social interactions.

zzzzz Thu 20-Apr-17 12:02:50

Ds has been discharged multiple times (severe language disorder) its how they "manage" their waiting lists/funding accountability . It has NOTHING to do with progress/outcomes.

youarenotkiddingme Thu 20-Apr-17 12:20:55

My ds has also been discharged numerous times with good language skills.
The specialist advisor teacher for autism who is a salt assessed him and gave him a 'dx' of moderate communication disorder with severe disordered use of language skills and ability to process language in busy environments.

To talk to my ds he sounds like a mini professor! He repeats chunks of learnt information about special interests. He cannot discuss the weather!

Everyone is right that a skilled clinician will pick up on all of this. And not being diagnosed at 3 doesn't mean they won't continue assessing - because it's very true about demand outweighing capability.
There is a general rule about 2/3 social and emotional developing age with asd.
So at 3 his development would be at the 2yr stage. Considering the range of development that naturally occurs in this age range it may not be seen as remarkable.

But once a child hits 8/9 and socially and emotionally they are 6 it becomes more obvious. This is because at age 7 children take a huge developmental step and they leave the egotistical stage. They develop an ability to form relationships because they are more aware of others and their needs as well as their own. So a child who's developmentally about 6 will show more remarkable difference. (This is what happened to my ds)

He's now 12 and whilst those 8/9 yr olds now are 12/13 - ds has just hit tat developmental stage they were at 4 years ago. The difference is even more remarkable.

For me the focus is to work on the skills ds needs for himself and independence and to have a fulfilling life and get his needs met. I'd be asking for advice on how to support ds with this whether they diagnose now or take a wait and see approach

youarenotkiddingme Thu 20-Apr-17 12:27:11

Sorry meant to add at 2/3 it was mainly me and mum who noticed it. At age 8 it was is, wider family and school could see 'something'.
Now at 12 most people pick up on it but we've only received positive reactions and support from the wider community and places like his swimming club who communicate effectively with him and he's performing well for his age.

imip Thu 20-Apr-17 15:07:13

I was completely disbelieved when I suggested ASD for dd (now 8). She was 7 at diagnosis and, as mentioned above, a skilled clinician would pick this up at ADOS. While dd answered some things 'correctly', they felt they were learned responses. Her talked tended to be only about her and I was impressed at the level of detail the report went into - could really pick up the subtleties and masking.

However, we saw a child psych for one year prior to going to cahms. She was completely unable to see dd autism and discounted mess neurotic. Hopefully those who deliver ADOS are the best of the best!

MollyBloomYes Thu 20-Apr-17 22:02:59

This is all really interesting, thank you. I think I'm just spiralling a bit because it's been such a long wait so plenty of time to speculate! He is markedly different in his play and skills from his peers to my mind but equally has done so well since starting pre school that I keep going back and forth! Oh well, not long to wait now I suppose, thank you all for giving me some insight

Allthewaves Sat 22-Apr-17 20:34:37

*

I guess what I'm worried about is he is very good at mimicking others and replicating tv programmes etc. He actually reminds me an awful lot of how a girl would usually present.*

My ds does the same. The salt who were his main assessors flagged this as an asd trait in my ds. He had no imaginative play and could only recreate tv programmes. He's five so they could talk to him. He started his diagnosis at 3 and took two years as he's very variable in his traits. We ended up being reassess even 6 months and had several schools visits

pandyandy1 Sun 23-Apr-17 17:34:40

I had the exact same worries as you! He'll mask, he'll be too subtle.

No. In Jan my Son (just turned 4) received a diagnosis.

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