Can i argue against asd dx?

[sodit]

ds1 is due for his cdac in jan he has just got a place at speech nursery and i want him to go to speech unit in ms school after. The admission criteria is those children with asd not suitable. I think ds1 has sli with asd traits, I am worried if he is dx with asd it will go against him. He is not autistic but tettering on the edge of the spectrum iyswim but doesnt like being tested or drs etc so will probably appear autismic on the day those who deal with day to day agree with me and will probably put this in reports.
Question is if he dx asd can i argue against it as it has no benefit for him (he will get a statement through nursery now) & only reason i wanted him dx was to get statement.

Don't honestly know the answer to your quesion, but if you don't think he has enough traits for a diagnosis then you will probably be proved right
DD1 had enough to be referred for diagnosis aged 3 1/2 but scored zero in the ADOS test and by then I completely agreed. Until a few months before I was totally convinced she had ASD, but after a lot of good OT and speech therapy the traits gradually disappeared ( although certain things can appear again when she is under stress or very sick ) She has dyspraxia, and what I now understand is that children with severe SLI can present with autistic traits - this was certainly the case with DD1

....what B2B has just written if word to word what ds's salt keeps going on about "that children with severe SLI can present with autistic traits".
SLI is what salt says DS has.
But DS has plenty of others issues, and paed has now refered him to Camhs for asd dx assessment.
Ds is also in language unit in a nursery setting, and they have warned that should DS be dx with asd his place will have to be reviewed by the SEN panel as they don't take/keep children with asd dx in the unit.
Apparently the setting isn't suitable for them! ....well they've told me that DS was doing great this morning, but if in a few months he gets asd dx then it won't suit anymore! wtf!!! ridiculous....

Bubble2B, can i ask you a question if you don't mind...
How old was your dd when the asd traits started to disappear?
I too am convinced (most days) that DS has asd and not just SLI, he is 4.
And i'm clinking to every bit of info that gives me a bit of hope as i'm always in turmoil over the asd issue.

Sorry Sodit for hijacking your thread...

Probably between about 3 1/2 & 4 I think...
I know it sounds very bizarre, but as her peadiatrician said you can't be cured of autism so we have to assume it wasn't there in the first place ( kind of makes me sound like I had Munnchausens or something ) But by this age DD had taught herself Makaton from TV and had 2 or 3 words. there was never any doubt about her 'commnunicative intent' (as they kept calling it), nor about her receptive language ability
Didn't have a very sympathetic SLT at the time who just dismissed my claims of ASD as nothing to do with her, but even if she had suggested it was possible to have ASD type traits with a SLI I probably wouldn't have believed her TBH. Should say we also had a private - but, with hindsight, very unsafe - diagnosis of ASD when DD was just about 3

I've actually been dwelling on it quite a lot recently and trying to make sense of it myself. The really big breakthrough was seeing a sensory integration trained OT - definately took away a lot of DD's fear & anxiety and impacted on her speech as well.
OMG does any of this make any sense to anyone?? ( bit tired tonight & not very fluent sorry! )

Yes it does makes sense
I'm terrible always trying to find if another child 'match' my DS's 'traits ' so i can assume with more certainty whether my DS has asd for sure or not!
I know it's a stupid thing to do and its' pathetic on my part.
This is what the last year of worrying over asd has reduced me to.
My DS does want to communicate yes, but it can be on his own terms, and he does have some receptive issues so i guess a full assessment is really the only thing that will swing it one way or the other, i can speculate all i want i don't have all the answers atm.

Thanks for replying .

Bubble2b - your story is so interesting and yes it does make sense to me! From what I understandy my DD 3.5 is shortly to be diagnosed with ASD. I can't deny she does have traits - speech and language - I think she has a reasonable understanding of language but she is significantly behind in expressive language she has echolalia, uses learnt phases and gets pronouns mixed up but all this has improved during the past month with speech and language therapy plus she does come up with original speech from time to time. She definatley has problems with making friendships within her peer group.

Hope you don't think this is too cheeky but could you expand on the sensory integration trained OT. My DD gets very anxious and cries when we have visitors to the house. Do you think an OT could help with this?

Apart from the above DD is fussy with food and jumps and flaps a bit when excited but not over excessively maybe 2-3 times a day.

I have a lot of hope for the future.

Sodit - apologies for rambling on about myself! From what I understand you do not have to accept diagnosis especially if it will not help your ds. I'm sorry I can't remember exactly where I heard this from.
Maybe you could just cancel your appointment in January and tell Paed you do not want to take things further as you feel dx will not benefit your DS.

mysonben you take the
no hijack away its all relevant guess its just wait and see. The is he isnt he will continue.

hi Eviebaby - not cheeky at all...but apologies to sodit f or opening a whole other can of worms

Food issues and flapping etc can definately be sensory related and can be helped. Dd used to run away when unexpected visitors came though was OK if she was warned who was coming - not sure if that's the same for your DD ?

Things we had no idea were important were delayed motor skills - didnt' walk until 19 months, at 3 couldn't jump or hop, had no balance, was terrified of stairs or anything other than completely level ground, couldn't pedal or do anything that involved having feet off the ground...In strange places she would cling to my hand as if her life depended on it, at the playground she would stand and gawp at the other children - we interpreted this as a social difficulty when in fact we now she was just tryng to work out what to do as anything that moved, kids who ran too fast were just scary as she had such a (justified ) fear of falling etc. The OT basically taught her to overcome these fears over a couple of months and after each session she had a massive burst of confidence

And the effect of this was that her sensory issues - noise, certain clothes etc - and her obsessions - lining things up, going out rituals etc basically disappeared,and her behaviourin social situations completely changed... Gosh it's very hard to explain!

A couple of websites which may help:www.sensory-processing-disorder.com/index.html or
www.sensorynation.com/

Of course the other thing I didn't know is the vestibular sense which controls balance is SO closely linked to speech and also behaviour self regulation. (Dd age 2 -3 could have gone off in a strop and easily stayed away for 45 minutes - now I have DD2 I realise how bad this was )
Sensory integration thing just a huge subject but if you can find an OT who is into it it is definately worth a go

Thanks Bubble2b - unfortunately DD cries loads when anybody comes to the house even if they are just standing on the doorstep talking to me She stops crying as soon as they go away or leave the house though??

Thanks so much for the links I will have a look and I'm glad things worked out positively for you and DD.

Bubble2bubble - Very interesting, my ds was 'diagnosed' with sensory modulation disorder in December 2008 by OT. I have since been told that SMD or SPD is a just a symptom of something else ie ASD etc and that lots of ASD children have 'undiagnosed' SMD or SPD.

Interesting as to whether SPD is a stand alone dx (apparently it is in USA) or whether it is just a symptom.

yes, the OT we saw trained in America and would therefore think along those lines.

A lot of her work is with kids who just don't fit any diagnosis - struggling at school age 7-8 but noone knows why.I think very often SPD does come with autism, but not necessarily. Likewise she thinks there is a of undiagnosed Auditory processing disorder.

I found this all quite hard to believe at first - and worry that I sound like I have a child with autism but am in denial
I honestly cannot find words to express the transformation that we have seen in DD in the last year or so, so have no choice but completely buy into the theory

Remember that Autism is not one thing .

I've concluded now that there is one "autism" (language-led and genetic) that is precisely the same thing as severe receptive language disorder. If it's mild enough to overcome, it gets called language delay +sensory issues. If you have to live with it and manage it, it gets called autism. It's the same thing though.

There is probably another "autism" (again genetic) that is precisely the same thing as SPD (at the heart of which is problems with processing touch and movement). Again, if it's mild enough to overcome, you find another name for it.

I might be right here, I might be wrong, but I'm absolutely convinced it is a sterile exercise to try to find the difference between language delay/SPD and their "matching types of autism.

Consquently, the OP's school's policy is absurd.

completely take your point linglette

I have always also said there is a very fine line between what my DD has and autism - a line which she may occasionally cross over & back again.

Do some people also put dyspraxia on the spectrum for the same sort of reasons?

Her language unit also excludes children with ASD dx, though about half the kids have receptive language disorder

bubble2bubble - Im exactly the same! Having the sensory modulation disorder 'dx' first, i was convinced my ds didnt have autism, as i can see how all his 'problems' can relate to sensory issues ie auditory and auditory-language, tactile, vestibular, proprioceptive processing dysfunctions.

Im still not sure, but have come to realise without a dx (SMD isnt a dx in this Country, as im sure you know) ds will not get any help. Although needs should be needs, regardless of dx, most seem to need a recognisable label before they can even begin to try and understand why ds behaves the way he does.

For me it has become a case of i dont care if they label ds with the wrong label anymore, its all about being more 'eligible' for help and understanding!

Your theory is very interesting and it is nice to speak to someone who has a good knowledge of SPD.

What has worked for you, in your transformation?

Claw that is a really difficult question!

DH & I were discussing the other day he wonders how much of the progress has just been natural development, but I actually think that without the intervention DD would have been getting worse by now. But what it was exactly that made the difference I am honestly not sure

Dd's gravitational insecurity was apparently the worst the OT had seen in 20+ years of
practice, and her balance was so bad that even seeing the wobble board or a wheelie chair made her shake with fear and lash out really agressively. However it happened, over the course of a few weeks, her desire to overcome the fear grew stronger and she managed to do things she had never done before and the pleasure & confidence this gave her was immediately obvious. After a few sessions we came out and for the first time in her life she ran ahead of me to push the button the traffic lights and I burst into tears I was so happy for her! She had never before left my side when we were outside the house and always held my hand as if her life depended on it. She herslf knew that something was happening and really wanted to go to OT and always asked when we were going back.

On the other hand we had a couple of very rough weeks when the OT did the sesssion with a visual timetable and started to challenge DD's control which was quite horrible to watch, but was also a major turning point
Apart from that I think the way that I dealt with DD changed completely - I freely admit I was getting frustrated with her without understanding what was wrong, and once I did more or less understand I think it must have been a relief for her as well as me
She is so aware of her difficulties - the first time she wrote an X, for example, she knew she had done something momentous

So this is the child who at 3 could barely get up& down stairs, but at 4 had her birthday with 10 friends in a soft play and was flinging herslf down tube slides with the rest of them. She still has a very long way to go with her speech, but her physical difficulties are pretty borderline - she still looks a bit dyspraxic when she runs & sometimes still clenches her fists a bit, still doesn't like a bike much but prefers her trike, she doesn't have much upper body strength, would always hold on going down stairs

We are pretty sure she has APD though with so little speech it is difficult to test and she is certainly less noise sensitive than before. Her tactile issues seem to have gone( we also did brushing though adnittedly not for more than a few weeks). Her self regulation is fine, even though she does get frustrated at times it is not the major isssue that it was. She seems to have no fear of going to strange places, but rather enjoys it and wants to go. Her stamina is getting better though she does get tired - but she's only 4 1/2 !
Very interested to know how your DS has progressed since his DX? is he having therapy at the moment?

What a touching story and marvelous progress for you and your dd, thanks for sharing.

Strangely enough OT commented that ds's orally defensiveness was the worst she had heard of, she had never met anyone with such a limited diet!

When i met OT for the first time in October 2008, it was such a relief, after 3 years of specialists referring us back and forth. She understood and knew exactly what i was talking about. On our 4 visit she attempted some brushing therapy, ds reacted rather badly. She was supposed to go into school and work with him there, prepare report, provide sensory diet etc, etc but none of this materialised and we havent seen her since!

Your story has been quite inspirational, there is hope and that has made me smile

Really for you about the OT - how unprofessional just to disappear! I really hope you find someone else who can help

Don't give up