Who can overturn a diagnosis?

[deeeja]

Today, my ds was 'looked at' by a SALT whithout my knowledge at the local cdc.
After that, one of the health-visitors acted as if he should understand her instructions to sit quietly on the floor during song-time, and made tutting noises and gave him dissaproving looks when he kept trying to get the toy she was trying to put away. She then did the same when he ran away with a cardboard cut out shiny sivler star. I was told that they would have to 'think about' pecs and makaton for my ds.
I think they are trying to 'prove' my ds does not have asd. The consultant paediatrician who diagnosed him is on holiday.
They keep trying to persuade me that he has good understanding of what is said to him, just because he understands what a star is, etc. The salt looked at him when he was busy with a repetitive computer game, that all the other children bored of after 5 mins or so, but my ds stayed glued to it for the entire 2 hours we were there. That in itself is typical behaviour. Then all the other children put their coats on, I had to physiacally put my ds's arms into the sleeves, similar to a newborn baby.( I have to dothis with every item of clothing and it is exhausting), they still exclaimed that ds put his coat on so well, with me huffing and puffing while I tried to keep him from running off.
Can they overturn the paed's dx, and can the salt assess him with out my permission, and without me being there, or without asking me any questions? I feel as though they are trying to wash their hands of my ds, and are taking every oppurtunity to do this. What shall I do?
TIA

deeeja, I don't know for sure, but I would say that, given that neither a SALT nor a HV can diagnose a child as having an ASD, they cannot "revoke" a diagnosis either.

How very annoying and upsetting for you though. I would contact the consultant paed as soon as s/he returns from holiday.

What age is your DS?

Hi, Dinasaur, thanks for replying!
My ds is 2 and a half.
He hs a dx of gdd with asd, and I think there appears to be a problem with the asd part. It has transpired that I am very lucky to get that dx, and most people have been given a dx of gdd.
I think they are always sneakily watching my ds whenever I go there. They constantly come and stand infront of him to stare him in the eyes, and then tell me how great his eye-contact is.
I would stop going, but ds likes it there, and has never liked going anywhere.
I am so worried that ds will never get the help he needs.
The salt can stop my ds from recieving help with communication. I have really ushed and badgered them for this, and I don't want to give it up.
I am so fed up with it all. I thought once I have the dx, it will allbe sorted out. How naieve I have been!

oh yes i got a sense of deja-vu when reading this.
senco and hv tried to convince me that dd is not on the spectrum, that the paed hadnt looked at her properly that we had been done a disservice and that i should get her looked at again by another paed/psych in their nhs.

i r3efused and asked them did they want me to contact the consultant paed (who is very highly respected and people come from all over the north west with their children to see her) and ask her to explain her concerns about dd to them personally? they backtracked faster than i have ever seen and now she is an ICAN child despite them saying she didnt have a speech problem.
DONT LET THME BUlLY YOU.
i would add that we wrote to our paed and told her of the concerns and it was shortly after that that everything seemed to "fall into place" in terms of support for dd.

Who is it that gives a dx? My ds was assessed by ed pysych as being in high risk group for AS but didn't get a dx. The only person that seemed to think there may be doubts was SALT and ed pysch seemed to be taking her views on board above everyone elses. Consultant paed was convinced he had AS when we saw him.

This is deplorable. since when are SALTS diagnosing paediatricians? Does she have the "DISCO" training?

Time for a new SALT (our experiences have been horrendous with them, absolutely useless to be honest)

Remember what the motive is behind this - MONEY. Do they really care about helping your child or just about taking away his diagnosis so they don't have to help him.

All kinds of people come with their different theories and opinions. You meet so many opinionated people who think they know all about autism and all about your child.

What is it with the "eye contact" thing. My son has always had good eye contact. ASD is not diagnosed via eye contact. Another thing they might try to use is "he is so affectionate" he cant be autistic.
Yikes. Their ignorance is showing.

Wouldnt it be great if your child was not ASD???? But how dare they toy with your emotions and the vulnerability of a mother regarding their child.

You have to speak up for yourself, which obviously you have already done. Speech therapists are notoriously arrogant. Mine didnt know diddly about autism and only wanted to push ridiculous tests and picture cards at my son (he was having none of it) So they labelled him unable to learn. He learns quite well now, in his own way and without the need to fit in the speech therapists' box.

poor you. Save another family from having to suffer the b.s. of these people and make your voice heard.

My boy was dx'd at 2.4 years. They DID NOT want to dx but i made it quite plain he was not like his "peers" and put it all down on paper. I also videotaped him next to his friends. We got the dx with little bother.

Its all about the money my friend. dx'd children cost money and they will do whatever they can to save it. They also enjoy trying out their ridiculous theories at the expense of our children.

If there was even a whiff that your child had an ASD, why wouldnt they give all the help they could? It wont hurt him. Even if he was to be given all the help a child with an ASD received, and he didnt have an ASD, it would only help not hinder.

P.S. next time they try this b.s. tell them to put it down on paper and submit it to your child's paed. There is no point in hashing out their "theories" on your own. If they have something to say, that they think is useful to the benefit of your child, why are they toying with you about it? Tell them to put their money where their mouth is. Bet they won't though.

Parents can never win. We are too "stupid" to understand the lofty opinions of SLT's and teachers, yet they use us as sounding boards to peddle their crap about our kids cause they are too afraid to publicly announce to the diagnosing paed their "concerns".

Sounds like they are trying to silently coerce and convince you to their way of thinking, maybe they want to mesmerise you so that you dont ask for services. It is very cunning to toy with a parent's head about the diagnosis of an ASD. No parent wants the label for their child and some parents may believe "hey, if they say he isnt ASD, then maybe he isnt, and he doesnt need extra help". Well who stands to gain from this? The LEA and the OT and the SLT and all the other peripatetic services. One more child they dont have to offer services to.

Makes me ill. They should keep their nose out.

I can't believe what I am reading here.

OK, so some people have bad experiences of individual therapists. If you think something wrong has happened, talk to the therapist or go to their head of department. Don't rip into our whole profession.

I am a Speech & Language Therapist who, like the vast majority, communicates openly about the children in my care for their benefit. Usually there is agreement with medical colleagues, sometimes there is not. It is a rare paediatrician who would seek to diagnose ASD on the basis of one or two clinical appointments. That is why we have contact and discussion.

The idea that SLTs wouldn't wnt a child who has an ASD to be diagnosed is just crazy. I have never met a therapist with this attitude. Sometimes mainstream teachers have worries about "labelling", but they can be talked round.

It really worries me that the attitudes to S&LT displayed here could put other parents off building a valuable relationship with someone who could be a supporter and ally. Please think about it.

p.s. If anyone tries to tell you that children with ASD can't be affectionate or never make eye contact they are certainly wrong - ask to be referred on to an ASD specialist.

As a parent I am not worried that speech therapists might not like what I have to say about them/their practices, etc.

I am not here to support peripatetic services. My experiences with speech therapists have been woeful, something many parents share.

Speech therapists are not all cut from the same cloth and they are at the whims of financial cutbacks and constraints like everyone else who works with our children. In our experience, all we have ever had from a speech therapist is ridiculous tests for our son to complete.

This is not the venue to bring sympathy to speech therapists. This is the way it is. Listen to parents of which I am one. Speech therapy with respect to autism is wholly inadequate right across the country, if you are lucky enough to even get speech therapy.

Its not written into our statement and we had to fight for a year to get it. then when we did, we waited again. When we finally got this therapy it was almost useless, far from joined up with the other services my child was getting and we just decided not to pursue it and now pay privately for a well qualified therapist who knows his stuff.

What you cannot believe is what is going on with respect to speech therapy and other parents i know share my grief about it.

My boy has not been helped one iota by speech therapy. Does this mean that parents reading this are going to fire their speech therapists? Hardly. Please give parents the credit for knowing what is useful and what is not. Parents will figure it out for themselves.