SALT convinced not ASD

[dekra]

Hi everyone,

 

I picked up Finn from his special language resource on Wednesday instead of him being minibused home. As I was there I decided to take the opportunity to discuss my ASD concerns with the SALT now that he has been going for a few weeks. She basically said the same thing as the SALT that has seen him previously that she is sure it is only a communication disorder as he wants to communicate but has a lot of difficulty in doing so. Whilst she and the nursery are now in a better position than me to see how his interaction is with other children I respect her input in this area but I am concerned that ASD does not neccessarily mean children do not want to communicate but rather not just the physical act of speaking is valid, being able to communicate effectively, naturally and appropriately is just as important. So to me the speech disorder may be the only communication issue but it may not and I feel to dismiss anything further on account of him wanting to communicate is possibaly innappropriate. My gut instinct tells me there is more than just the speech itself here but ofc I am not an expert, I am just concerned some of the so called "experts" seem to be blinkered to defining his problems solely within the scope of their own specialist remit. They seem to think they can "fix" him with the work they do and until that either works and they take the credit or fails and they blame Finn and then say it must be ASD if we didn't succeed then I don't think they want to consider ASD.

 

Am I reading too much into this? I know when I went for the initial assessment the SALT there said same as my first meeting with her (when she has observed Finn for 5*10 mins) that she too felt it was communication disorder only. This was what prompted the first paediatrician to say not ASD just GDD yet when the review meeting with the more senior paediatrician and psychologist happened they were acknowledging he had difficulties within the triad of impairments and decided on further observation (mainly via the language resource who as I say are anti-asd dx).

 

My husband and I are considering emigrating in the next few years and would like a definative dx before we do so in order to make sure we take Finn's needs into consideration before we take such a drastic step.

[justine1]

Hi everyone,

 

I picked up Finn from his special language resource on Wednesday instead of him being minibused home. As I was there I decided to take the opportunity to discuss my ASD concerns with the SALT now that he has been going for a few weeks. She basically said the same thing as the SALT that has seen him previously that she is sure it is only a communication disorder as he wants to communicate but has a lot of difficulty in doing so. Whilst she and the nursery are now in a better position than me to see how his interaction is with other children I respect her input in this area but I am concerned that ASD does not neccessarily mean children do not want to communicate but rather not just the physical act of speaking is valid, being able to communicate effectively, naturally and appropriately is just as important. So to me the speech disorder may be the only communication issue but it may not and I feel to dismiss anything further on account of him wanting to communicate is possibaly innappropriate. My gut instinct tells me there is more than just the speech itself here but ofc I am not an expert, I am just concerned some of the so called "experts" seem to be blinkered to defining his problems solely within the scope of their own specialist remit. They seem to think they can "fix" him with the work they do and until that either works and they take the credit or fails and they blame Finn and then say it must be ASD if we didn't succeed then I don't think they want to consider ASD.

 

Am I reading too much into this? I know when I went for the initial assessment the SALT there said same as my first meeting with her (when she has observed Finn for 5*10 mins) that she too felt it was communication disorder only. This was what prompted the first paediatrician to say not ASD just GDD yet when the review meeting with the more senior paediatrician and psychologist happened they were acknowledging he had difficulties within the triad of impairments and decided on further observation (mainly via the language resource who as I say are anti-asd dx).

 

My husband and I are considering emigrating in the next few years and would like a definative dx before we do so in order to make sure we take Finn's needs into consideration before we take such a drastic step.

Hi Dekra

 

I agree with what you are saying wth regards to ASD kids wanting/not wanting to communicate. I have two boys on the spectrum and both have communication difficulties,remembering communication is not only speech but also non-verbal communication.

Sam has very advanced vocabulary,he can hold a conversation(talking in sentences since age 2)and it can be so mis-leading,in fact it was one of the reasons why I was not that concerned as I believed he is bright therefore he is fine. However he has trouble understanding non-verbal communication i.e facial expressions and body language which is having an impact on his social development,not understanding boundaries. He also has comprehension issues and gets confused by what he is trying to saying. So he gets speech and language sessions to help in these areas.

 

Dan on the other hand could not talk in full sentences until age 4.He did want to talk and had tantrums due to the frustration of being unable to talk. He used various methods to communicate,not all of them were appropriate like spitting and shouting but I would definatley say it was far from being a case of NOT WANTING TO but rather a case of needing more (and appropriate) help to speak. His eye contact is better than Sam's but he to does not understand body language and facial expressions. He still has problems with his speech its sightly slurred and he will be 6 in feb 2012.

 

So I would check that the are assessing or observing for both verbal and non-verbal communication. I am guessing you won't be moving abroad until after your course,so you have three years.I would say just put a bit of faith in the experts for now as you are still at the start of the whole process and at least Finn is getting some help and support. I am certain by next summer you will have a better idea as to whether he does have an ASD or not because he

would have possibly maade progress in all or some of the areas of concern. Then I guess of you still unhaappy you can get another opinion.

 

P.S sorry for typo's in a rush and keyboard it not working at the mo.

[Sally44]

There can be a timescale of around 18 months before a diagnosis is made.

 

It maybe better to have him observed where you go, and just ask that professionals involved produce a transfer letter, and say specifically to the SALT that as other professionals have said he has difficulties within the triad, that that is what you want in the letter.

 

I don't understand why the SALT is saying it could not be ASD because he wants to communicate. My son wants to communicate and he is ASD. There are lots of ASD adults on this forum 'communicating'. Aspergers, by definition is often at the more capable end of an ASD and they are often mainstream and 'communicating'. I would agree that more severe 'Kanner' type autism could mean the child was not interested in communicating. But even there, if you look at the Phoebe Cauldwell website, where she deals specifically with severe and often 'non-verbal' autism - she still manages to get the children/adults 'communicating'. You could sent an email to the National Autistic Society asking this very question and send her their reply.

 

Why don't you speak to the SALT and ask her specifically "WHY" she thinks this. An ASD is a spectrum condition. And many of the children do want to communicate, but they just can't because they don't have the language, or social skills. You can also phone and speak with the other professionals currently involved [Educational/Clinical Psychologist?] about your concerns.

 

Children with an ASD may or may not also have a GDD, along with other combination of other co-morbid diagnoses.

 

Where are you emigrating to.

Edited November 18, 2011 by Sally44

[dekra]

Thanks for your input Justine and Sally. No we wouldn't be likely to go for 3 years to allow me to qualify, but husband found out this week a guy at the sister company he works for is going to Sydney and will essentially be doing my husbands exact job for 4 times the salary so we are seriously tempted. It was always something at the back of our mind anyway as we feel Australia is so much more family oriented and has more prospects for the kids futures. Part of me also feels bad contemplating being paid to train as a nurse for 3 years then leaving the country but given the current job sit I guess it's not a big deal.

Edited November 18, 2011 by dekra

[dekra]

Oh and Justine don't worry about the typos I'm dreadful for them too, especially if I'm using my phone to post.

[Sally44]

I know it is a general statement, but i've heard that Australia is quite good at identifying and supporting ASDs.

[justine1]

I know it is a general statement, but i've heard that Australia is quite good at identifying and supporting ASDs.

This maybe the case for Australian citizens, it is always much harder for foreigners,this applies to any country. I came to the UK 10 years ago and although I am a citizen now I still get discriminated against because I have a slight accent. So just a warning the grass is not always greener.

 

It is also very difficult with things like childcare because in the UK we are entitled to benefits that help with childcare costs when you go abroad you loose this,something to bear in mind when looking at salaries. Lack of family and friend support is also a major issue to consider,especially if you have a child with a disability. I am lucky as most of my family are in the UK and had settled here a good 5 years before I came here.

 

Not trying to put you off just talking from experience

[puffin]

I'm not sure what your SALT really means - I agree with the others that you should ask for clarification

 

My own DD with AS has always been highly verbal - don't understand the concept of "not wanting to talk" at all - however where she was limited was in her use and understanding of social and emotional langauge - she had a lot of testing as well - well in excess of 20 hours and also a billigual assessment as she attends school in Sweden

 

I also have a cousin whose daughter was diagnosed with AS and attends school in Australia where they have had very good support in contrast to the UK where her difficulties were not fully recognised

[Sally44]

My son is going through a "Pokemon" obsession at the moment. And he is talking about it all the time and playing it on his Nintendo DS. He knows all the names, and their abilities and what they change into and he goes on and on and on about it. So again I don't understand what this SALT is talking about.

 

Where his difficulty [with this specific thing] is, is that he does not know when to stop, does not even understand the need to see if people are interested in this topic, he finds it hard to control himself and often butts in with "Pokemon" updates. He really is like a fizzy drink, bubbling over the top of the glass with his current enthusiasm. And he wants to show me it too on the DS. So again, I know that some more severely autistic children are not supposed to bring and show things, but my son always has.

 

A social communication difficulty can range from not wanting to communicate at all or being totally unaware of others, to communicating inappropriately, talking all the time, to the point of pestering others to just listen to your interests.

[OzKazz]

We are moving from Australia to the UK for our son whose primary diagnosis is Aspergers. The support here has been horrendous and we have had to fight the Catholic education system, ASPECT (main independent ASD education provider) & the NSW state education department all of whom we were successfully able to prove breached their legislative requirements & their own governance in their blatant discrimination & abject mistreatment of our son. He is 10 & home schooled as he does not fit the requirements of a special needs class but also doesn't get the level of support he needs in mainstream schooling due to ridiculous way funding is provided over here. Your best state is QLD.

[Sally44]

I wondered how things are going?

 

The only way to determine real skills is for the SALT, EP and OT to carry out standardised assessments. For example, a SALT standardised assessment such as CELF 4 or ACE, is going to assess all his expressive and receptive speech skills. And those on the spectrum usually have a very spikey profile, where they do well on some elements and very poor on others. An average score on each sub-test is 8-13. My son scored 14 and 15 on some and 1 on others [where a score of 3 is classed as severe]. Yet, as you see, some of his other scores were above average.

 

And most importantly, the areas he really struggled with were the ones needed most in social situations, and in the classroom where he would have to manipulate learning rather than just repeat facts he had learnt verbatim. So my son could hear a story and repeat it word for word. But if you then asked him to explain why the character xxx thought xxx - he would not be able to do it. He also found it very hard to formulate sentences ie. he was shown a picture and asked to make a sentence to include a certain word. Eg. shown a picture of a fruit and veg shop and asked to make a sentence using the word 'tomatoes'.

Edited October 18, 2012 by Sally44

[dekra]

Quick update Sally.

 

Finn has his ADOS in May and his scores were below that for diagnosis. They have given dx of developmental delay and language disorder. He was signed off from the hospital team and referred to the community paediatrican whom he saw last week for the first time. She has agreed that in the months since his assessment his language skills have developed but his social skills have not and this may indeed indicate ASD might be the relevant diagnosis. But what she advises and I agree is to leave things are they are at the moment as Finn is getting all the support he needs at school, she has also referred him to OT for his fine and gross motor skills (still can't hold a pencil properly and finds it difficult to make marks on paper) and as he has this support and a 5 year DLA renewal then they will leave re-assessing for a while until it's clearer or until his needs change and having that dx is important.

[Sally44]

How old is Finn?

I presume he does not have a Statement?

What school does this unit feed into for secondary, and would he automatically get a place there without a Statement.

 

You just need to be careful. It is okay to wait and leave things. But if you then find your child is excluded because no-one did anything you would be kicking yourself.

 

My son was mainstream primary and I was advised to "wait and see how it goes", well it went badly for 2 years, and when I finally asked that he was moved into the Autism Unit I was promised would be available if needed, I was told that all the places were full. And that even if there were a place available, my son did not have a Statement, which he needed to have to get a placement there. So how convenient it was that nobody told me that!

 

Anyway, 2 tribunals and a number of years later, he is finally in the right school - but I am still so very angry at all those people along the way who kept advising to 'wait'.

 

As long as your child is happy that is okay. But do look into what is needed in the future - about 2 years ahead, to make sure you are on track to get that.

[Sally44]

Regarding OT, it will take a considerable amount of time before he is seen [took us 2 years], so phone and check to see what the waiting list is and what the criteria is that they see children - because where my son was referred for had a criteria whereby certain types of disabilities were prioritised over an ASD regardless of how long you were on the waiting list.

 

You will not get 1:1 OT input. You will probably get some kind of assessment and recommendations into school. So if you can afford it, it might be worth having private OT input.

 

If he has a Statement, and 1:1 OT therapy has been recommended, then the school/LA must provide it. But the NHS OT will not recommend that because they don't provide it. So you would need an independent/private OT to make those recommendations in a report for Tribunal - if you end up going down that road at any point in the future.

 

 

[dekra]

No Sally he does not have a statement we live in Scotland don't need a Statement here and he's just turned 5. The language unit doesn't feed into a particular school. He will go to the mainstream high school which is about to be built to replace the local school and is due to be complete in 2015 so when he goes in 2020 it should still be state of the art and hopefully well provisioned for additional needs children.

 

I feel confident things are going well and that the professionals involved in his day to day care are co-operating and also keeping me in the loop. we have regular review meetings and I am able to contact them directly at any time if I have concerns or questions.

 

Again with the OT I think it is different here in Scotland and it is needs driven not diagnosis driven - even with it being diagnosis driven his dx is language disorder and developmental delay so there the dx as it is should be advantageous to me. The OT waiting list is around 4-5 months at the moment and I know this from talking to OT's themselves whilst I was working with them recently.

[Noskcaj86]

"being able to communicate effectively, naturally and appropriately is just as important"

 

Hi, This sentence got me thinking... my son wants to communicate, but finds it hard. His language has been very delayed, when he was 2 and a half his language was delayed by 18mths. He is 4 now and talking in sentences after 2yrs speech therapy so he has done amazingly well but its not easy to understand him and he gets pronunciation wrong a lot of the time, such as he pronounces see saw as "saw see" and Tractor is "tortak". He also doesnt understand facial expressions easily, he will laugh at someone crying or at a stern look etc. He is overly friendly when playing with other kids, in a way that can put people off playing with him, he's to intense and invades personal space by touching peoples faces and being pushy and rough. He is trying his best to communicate with people and really wants to, but he doesnt have the skills to do so yet... Hes been referred for ASD assessment. There have been comments by teachers at school along the lines of "It cant be ASD, hes to social". But they dont see him at home "cuddling" his baby brother to the point I have to intervene and rescue my 9 month old before hes seriously injured! My son thinks hes being friendly and is trying to show his baby brother affection, but its in a totally antisocial way. My 9 month old will start crying because hes getting hurt but my son carries on because he doesnt understand hes upsetting/hurting his brother.

 

Im not sure how relevent any of my ranting is, and its probably no help to you I was just reminded a lot about my son with what you had written about yours so wanted to share

thanx

Edited October 26, 2012 by Noskcaj86

[dekra]

I get exactly where you are coming from here Noskcaj. It appears some people can't seem to understand that a desire to socialise and the ability to do appropriately are two different things.

 

The seem to understand classic kanners autism and they seem to understand Aspergers but they can't seem to understand that a child with speech difficulties might reflect kanners in some ways but more Aspergers in others. The number of times I've wanted to scream "but it's a spectrum condition". Yes he has strengths that some children on the spectrum do not for example he doesn't have a major problem with routine changes (although he does on a small scale, clothes have to go on and off in a certain order for example - NEVER try putting socks on before trousers) so again they are imo failing to dx more due to abilities rather than inabilities. It does frustrate me at times but we have gotten to the stage where we are happy with things and the change of the name on the dx is largely unimportant at the moment. Ironically the only difference it would make would be explaining to outsiders if something happens such as inappropriate contact with a stranger.

[justine1]

Exactly Dekra you have worded that very well! Dan is one who is in the middle so to speak (his dx been HFA) he has quite delayed speech(2.5 yrs behind) but is very popular,although he struggles to play with his friends rather alongside. Alot of his social problems are to do with touch,he hates touch of any kind(especially on his head) and the other is getting dirty which is a challenge if you are a 6yr old boy. He loves football and is very good at it but the teamwork side is an issue for him.

 

Sam's problem is just to maintain friendship's which he has been able to do for about a year now( since age 8) he is capable of making friends and can interact well at times. Unlike Dan he does'nt have to much issue with touch,this could be because he has been doing massage in his ASD unit for two years,and does not have an issue with getting dirty. He does have sensitivity to sound but his best friend at school is quiet so that helps alot.

 

ASD is a develpoment order and I for one have seen how 6mths,12mths,2 years can make all the difference. When Dan was 4 yrs old I was so sleep deprived and worn out by his behaviour,now he is 6.5 years old and he is not so much of a challenge(only if we are out!) The ASD has not gone,he still has many issues but I do feel he is developing albeit 2 yrs behind his peers.