Jump to content
claire4274

ADOS ASSESSMENT - not at the moment diagnosis!

Recommended Posts

Hi Sally,

 

We do believe that Ben also has APD, although not officially diagnosed. When we were seen at audiology a couple of years agao they said that he was too young to be diagnosed with it, but it was probably that as his hearing tests were fine. He doesn't tend to mispronounce words that much, but will mishear what is being said loads, especially when there is other noise going on. I also have APD and cannot hold a conversation in noisy places as I cannot hear what is being said. I have to be able to see people's lips to help me understand what is being said.

 

Ben's reading and writing are both above average for his age and we have no problems with that. Although being a good reader, he hates to do it.

 

I think that is our problem at the moment. Is it just SPD causing all of our son's problems or is there ASD in there also. I know that there is a lot of crossover between the conditions, which is why it is so hard to know what is going on.

 

We are waiting for the SALT to get back to us next week and we are going to push for theory of mind and social communication skills if she doesn't suggest them. She is waiting to speak to school and her boss first. Another thing we noticed whilst the SALT was here was that when she was askiing Ben questions, he looks to us, especially me, for either help or reassurance to say the right thing. He always does it when at appointment etc. I just hope that she also noticed it.

 

With regards to arguing and not making sense, I cannot think of a specific example at the moment. All I can think of at the moment is he will keep interupting you with "but, but, but...." and when you let him speak he will either have nothing to say or just keep repeating his side of the arguement that he has already said and say that we are not listening. When we say we are listening but that either his side of the arguement is not right or that he cannot do what he wants etc, he still goes on about his side of the arguement, just getting more agnry or upset. A lot of the time it seems to be arguing for arguing sake. He cannot accept being in the wrong or not getting what he wants so he just argues. If he runs off to his room we can still hear him repeating his side of the arguement, talking to himself.

 

Claire

Share this post


Link to post
Share on other sites

So, eventhough he confuses sounds, he has learnt correctly his letter sounds and can correctly identify a letter sound and blend and segment words for reading and spelling? So his 'interpretation of sound' is correct when the background noise/distractions are removed? His talking and spelling is correct and he is able to decipher words to read?

 

Because he finds it hard to put together an 'argument', that may indicate 'word finding' problems, or 'formulating sentences' problems, or 'theory of mind' problems because he cannot put himself in your shoes and think what information he needs to give to you for you to understand.

 

There is a specialist consultant at GOSH for Auditory Processing. His name is Dr Tony Siramanna [not sure i've spelt his name right].

 

Is he able to explain himself, or give a description of something and you can understand what he is trying to tell you. Or does he talk and you have to prompt him by asking questions like "are you talking about something you've seen on TV" "who are you talking about?" "when did that happen". Does he give you information and you are left none the wiser about what he is talking about, who it involved, when it happened, or what is the key issue he is trying to get across to you?

Share this post


Link to post
Share on other sites

I think that if background noise is removed he can usually hear okay. With regards to reading, we have always done a lot of reading with him at home when it is quiet, no tv etc on, so I think that he has been able to hear. He also seems to have quite a good memory because if he couldn't read a word I would tell him the word and tell him to remember it. I would then after he was finished reading go back to that word and ask him what it was. He could usually tell me.

 

Ben can talk to you about something and I think he expects us to know what he is talking about all the time. Sometimes you can understand what he is talking about, but if we ask him to clarify what he is talking about he will get angry and impatient with us.

 

I wouldn't say that he appears deaf all of the time however, sometimes if he is engrossed in something you will have to call his name a couple of times. Or I can be talking to him and will have to ask him what I have just said to check that he was listening. This is especially if there are other distractions ie. tv, playing with something etc.

Share this post


Link to post
Share on other sites

Memory is a funny thing. My son can very quickly learn the whole dialogue of a film, and then repeat it verbatim back to himself. He is like his own personal DVD player because he says he can watch the pictures in his head and re-run the dialogue. But if you ask him to go upstairs and get something, he will disappear and you won't see him again.

 

It is the same with reading. He can hear a book being read once or twice, and then he knows the words verbatim, page by page. And he can also learn his spelling list and get 15/15 right, and then not recognise the same word in a book.

 

Ben can talk to you about something and I think he expects us to know what he is talking about all the time. Sometimes you can understand what he is talking about, but if we ask him to clarify what he is talking about he will get angry and impatient with us.

 

I think the above is important for the SALT to know because it again seems to indicate that he thinks you know information that you could not possibly know ie. he thinks that if he sees or experiences it that you automatically know as much as he does. Or he cannot recognise the salient facts of an event to be able to pass that information to you so that you understand what he is trying to communicate.

 

And appearing deaf can be typical of a SPD, or APD, or an ASD. It is about focus and screening out everything else to concentrate on what you are focused on.

 

I hope you start to get some answers. Please don't be fobbed off. You will probably find that your son uses alot of coping strategies, but that as demands start to get more difficult both academically and socially, that those coping strategies will start to fail, and he will become very frustrated and upset if the right kind and level of support is not in place.

Share this post


Link to post
Share on other sites

A good example I have is from the visit by the Social Worker yesterday. [We have just managed, after 7 yeaers, to get a SW through the front door to assess my son for support and also to assess me as a carer.]

 

Last week the SW said that on "initial appearances" my son appears the same as any other kid. And an ASD can be like that. But I told him, you only need to spend a few seconds with my son to realise that he is different.

 

Anyway, yesterday he came to the house just to mainly see my son, and he engaged him in conversation. My son would answer the SW questions, mainly with short answers. But immediately tried to change the topic back to something he wanted to talk about. He wanted to tell the SW about a funny episode from a TV programme he likes. He talked to the SW for some time, and the SW asked for alot of clarification questions.

 

When my son left I asked the SW if he understood what my son had been telling him and he said NO. He said he knew it was from TV, and about a hotel, but that was all he could understand. And he agreed that it is very difficult to understand what he is trying to tell you, and that could be about TV, or feeling ill, or being upset. So I think he is starting to form a picture of my son's needs.

 

I think that very often, eventhough parents have concerns, they are also the best people to be able to 'understand' what their child is saying or feeling and so we can underestime their difficulties. I have often thought "there is nothing wrong with my son at all", and then a couple of minutes later I can see he does not even have some basic skills and it is so obvious that he is struggling.

 

Just don't stop until you have all the answers you need, and don't be afraid to ask questions or even challenge professionals and ask them to explain 'why' they have come to the conclusion they have.

 

I also recommend that you download the SEN Code of Practice from the publications section at the top of the Education Forum. That details the graduated approach to support for SEN. It is worth reading the sections relevent to your son's stage in the SEN process, as well as the next stage up.

Share this post


Link to post
Share on other sites

Glad to hear that you are starting to get help with your son.

 

I agree that parents are sometimes best placed to realise that there is problems with their child. We have also questioned what we believe, often thinking is it just us looking for things to fit with a diagnosis? I'm not 100% sure what is causing his difficulties, but I am not prepared to be fobbed off again, like we have been in the past. No matter what is causing the problems, we still need help with him.

 

One thing that I found interesting today was my husband spoke to his teacher about the results from the SALT and explained they want to speak to the school. She was suprised that he scored so low on the sentence comprehension part of the test saying that he is usually good at reading a book and understanding what was going on in the story. However, the SALT said that he was quite good at being able to answer questions when the answers were given or if he could see it in a picture, but not so good when he had to think up answers himself ie. what would a family do after they had been burgled (as in the test).

 

I think he is very good at hiding things at school. At least school may start to realise that he is not managing maybe as well as they think he is.

 

I have also already downloaded a copy of the SEN Code of Practice.

 

Claire

Share this post


Link to post
Share on other sites

My son is the same. He got 'advanced' scores for part of that same test you are referring to when he was asked about a story he had been told. He had rote learnt it. So any question about what had been 'said' he could answer. But if asked a question like the one you've posted, he would struggle more. I think it would be very interesting for the NHS or an independent SALT to carry out the CELF 4 assessment, especially 'formulated sentences'. In that assessment the SALT tells the child a 'word', and asks them to make up a sentence using that word [i'm not 100% sure, but I think they even given an example]. Then the child has to do it. And the words get harder and harder. What tends to happen, with a child that has expressive language difficulties, is that they start to put the word at the beginning of the sentence, because they cannot 'hold' the information in their head and manipulate it.

 

So if given the word 'through' they might say "through went the boy" instead of something like "the boy went through the hole".

 

My son also does alot better when there is supporting visual information in pictures/TV/films etc. In those formats ALL the information need is provided on the screen eg. who said what to whom and where. In real life it is not like that. You get the information from the person/situation/environment you are in, and have to 'guess' about what someone else may have said or done and where and why. If there has been no visual information for the child to draw from, then often they just have no idea. This is due to many combinations of difficulties with inference, imagination, theory of mind etc.

 

AND - the skill of formulating sentences if the MAIN SKILL needed in school/life. Because in exams you are not just regurgitating information verbatim [which my son is very good at]. You have to answer a set question that requires you to manipulate the information you have eg. "in the story xxxxx, xxxx is the main character. Please describe how the other characters perceive her and give examples of the language the writer uses to get that message across." My son would have no idea how to answer that. [i know that is a hard example - but I think you get what I am trying to explain]. Or a question like "name 4 clues that made xxxx believe that xxxx was the burglar and put them in order of importance."

 

Anyway, keep us updated on how you get on.

Edited by Sally44

Share this post


Link to post
Share on other sites

Hi,

 

just another update.

 

We have been told by SALT that they have spoken to the school, and predictably the school have told them wehat we already know, that he is a model pupil, no concerns at all. She has also spoken to her boss and they have decided that they are going to keep his file open, do nothing else at the moment, and wait to see what happens with CAHMS, when we get to see them! We asked if they would do the other standardised tests and they have said no. If he gets a diagnosis of aspbergers then they will see him again. Feel as though we are banging our heads against a brick wall!

 

We asked if the SALT had seen anything unusual whilst she was assessing Ben and she said nothing that came to mind.

 

So we are either barking up the wrong tree with ASD or they are not doing enough testing.

 

So we are now considering going private to have these tests done because if we don't, we shall always have doubt.

 

Claire

Share this post


Link to post
Share on other sites

I don't see why SALT have to wait for CAHMS. CAHMS does not assess speech and language. Your son may have a Speech Disorder without having anything else on top. The SALT report should complement the CAHMS report, and can help CAHMS eg. lack of theory of mind, lack of social communication and play skills, lack of imaginatory play.

 

Also how do they explain the huge discrepancy from a standard score of 30 - 90?

 

And if he has a Speech difficulty/disorder, then the 'average' standard score gets higher every year, so his 30 score his year, may become a 25 next year [because other kids have grown up and improved in line with a years improvement, whilst he has not]. But again, time will tell regarding that.

 

I know that you don't know if he is on the spectrum, but from an ASD perspective you could easily explain those differences in scores due to difficulties typical of an ASD and causing a spikey profile. Do the SALT agree he has a spikey profile?

 

And if he is on the spectrum, there is nothing to say he could not be a genius, but with a difficulty that brings him down in some areas to a standard score of 30, and with help or support he may achieve so much more and reach his potential.

 

It maybe useful to see if you can have a report by the time you go to see CAHMS.

Share this post


Link to post
Share on other sites

Hi,

 

I agree that I think they shouldn't be waiting for CAHMS, but I think they are listening to the school and also to the same SALT that went to the school last year to see Ben. I certainly don't believe they are doing everything they can.

 

I asked about the results. She said that sometimes children with ASD score the same way Ben did, but some children with ASD score low on all of them. They are not explaining the score at all. They have said on the phone to both myself and my husband that he scorred very well on the test. The difference in the scores seem to have been forgotten. Also the fact that she noticed he took a quite a while to process information has also been forgotten. I am waiting for a copy of her report.

 

After speaking to my husband today, they won't do further tests, but want to help us get the help we need at home with his behaviours. Then do more tests if you want to help! :angry:

 

So we are waiting for a private SALT to get back to us because I agree that a report before we are seen at CAHMS would be helpful, even if it is to help rule out ASD.

 

 

Claire

Share this post


Link to post
Share on other sites

Hi,

 

just wanted to update. We have had our first appointment with private SALT, who we were very impressed with. She is going to come back several more times to carry out further testing, theory of mind etc. She agrees that from what we are saying a lot of his behaviours are typical of someone on the ASD. She has already given us some practical advice on how to deal with some of his behaviours. She deals with SPD in autism and is going to help us get help with that as she believes that he has needs that are not being met. When she has finished her assessments she will write us a report to try and get us the help we need.

 

We are also on the waiting list for CAHMS and have been told today that the appointment won't be until the autumn! At least that gives us time to get the assessment done by private SALT.

 

Claire

Share this post


Link to post
Share on other sites

Has she completed the sensory processing modules to receive a qualification in that area? If not she must be careful not to go out of her remit. She could comment on his Sensory Processing Difficulties [does he have a diagnosis of a Sensory processing DIsorder?]. But the LA may say she is not qualified to assess or make claims about it as she is a speech therapist.

 

My SALT said that my son was highly likely to be dyslexic and that more skilled professional input was needed to determine this. The school/LA EP did nothing about that for a whole year, until I complained. The EP confirmed she had not seen my son because school said they had no concerns. That worked in my favour because it demonstrated [one of many examples] of how his difficulties were not being properly identified, and therefore were not being met which was causing him chronic stress and anxiety.

 

If you are not looking for a move to an ASD specific independent secondary school that has OT on site, I would not worry too much at this stage. But when you are after that type of school you will need a thorough OT assessment and report to identify dyspraxia, hand writing difficulties, sequencing difficulties, sensory processing disorder - and to recommend 1:1 OT sensory integration therapy by a suitably qualified OT employed on site to meet that need. That is the only therapy no LA or NHS can provide. Only independent schools can, which can sometimes be the clincher in winning the placement. Anything less the LA can buy in.

Share this post


Link to post
Share on other sites

Have you/school been asked to complete he Winnie Dunn sensory profile assessment?

 

Do you need the OT's diagnosis to be confirmed by a Paediatrician?

Share this post


Link to post
Share on other sites

Hi,

 

we did complete a sensory profile questionnaire with the OT, but not sure which one.

 

As far as I can find out we don't need diagnosis confirmed by paediatrician.

Share this post


Link to post
Share on other sites

my son who is now 13 had this test and they said he didnt meet the criteria of autism, but I am sure that he is on the spectrum. When younger he displayed all signs and didnt talk much at 2yrs. They just seem to be doing this tick box thing and not looking at the whole picture. My 12 year old has a diagnosis of aspergers, but this was done by a paediatrician.[ who has unfortunately retired]

 

It is very hard going and a constant struggle but try to keep going.

Share this post


Link to post
Share on other sites

Hi Merlin1

 

Thanks for your comments. I agree that they like to tick boxes. The private SALT who we have consulted, and the school OT have also said the same thing. They don't believe that they are looking at the bigger picture either. Our son has so many of the behaviours but because school see no problems they don't want to know.

 

We have been fobbed off several times before, but not this time. We are so sick of not getting any help for our son. This time we are going to fight until we find out what is causing our son's problems. That is one of the reasons why we have gone private for the speech therapist.

 

Claire

Share this post


Link to post
Share on other sites

Hi Claire,

 

Was looking in to what the ADOS assessment actually was and came across this thread. I'm sure i read earlier in the day that Ben also has EDS? Struck a chord with me as it's a genetic condition that runs in my family, my 10 year old is diagnosed but my 7 and 8 year olds are not although it is clear they both have it (10yr old was Dx when he was being seen for something which i had considered totally unrelated, lol). It's my 8 year old whom i was searching for ADOS information about. Reading about Ben is just like reading about Charlie. I feel like i have hit brick wall after brick wall and it was almost reassuring to know it's not only me that this seems to be happening too. Hang on in there, you are clearly doing a great job of putting up the fight to get Ben's problems recognised, diagnosed and then get him whatever help he may need. Really, i guess i just wanted to reassure you that i understand your battle x

Share this post


Link to post
Share on other sites

Hi Pinkystimp,

 

I have heard of quite a few people with EDS who also have ASD, don't know whether there is some relation of not though!

 

I really hope you also get the help with your son. Ben is also 8. I think in the past we have thought that Ben would automatically get the help he needs as he has so many problems. I think we were a bit naive. I think that we just have to keep fighting. The problem we seem to have is his 'perfect' behaviour at school. As soon as medical professionals hear this, that is all they seem interested in.

 

Thanks for your kind words. Best of luck!

 

Claire

Share this post


Link to post
Share on other sites

HI Clare, that's interesting to know you know of others with both. Wonder if there is some kind of link somewhere?

 

Just want to make you laugh, Charlie is not so great at school, it is where he experiences most problems... only yesterday morning I got a call asking me to get there straight away (thankfully i don't work), arrived there only to be led out to the school field by the Headteacher... turns out rather than return to lessons after play time he decided a way nobody could get to him would be to climb a tree. Let's just say, i never knew i had the capabilities to do so myself until yesterday! It was a new one on me, after spending several hours previously locked in the stinky toilets, another time he locked himself in the classroom... school still see him as "naughty" rather than anything else as he is still yet to be diagnosed. I'm holding out hope for our next appointment on August 8th.

 

Keep us posted with how you are getting on with your fight for Ben

 

Amy x

Share this post


Link to post
Share on other sites

Hi Amy,

 

well done! Rather you than me, I hate heights! It is a shame school only see him as naughty. Then again if it is naughty behaviour they don't have to give him help, whereas with a diagnosis they do. I think they see what they want to see. Well we have the opposite. Ben is apparently "model" pupil. It is at home that we get the meltdowns and behaviour problems.

 

I hope you get somewhere at your appointment in August. It can be so frustrating. :wallbash:

 

Let me know how you get on.

 

Claire

Share this post


Link to post
Share on other sites

Hi Clare,

 

Well at long last we have a diagnosis! The Psychiatrist conformed Aspergers although said there are also so many other traits and behaviours from the whole spectrum. I am so pleased that now we can get the ball rolling for his return to school in Sept, and really hope it will be a much better year for Charlie.

 

Hope the case will soon be the same for you with Ben. All i can feel right now is relief :-)

 

I will keep checking back to see how you are doing.

 

Enjoy the rest of the summer!

 

Amy

Share this post


Link to post
Share on other sites

Hi Amy,

 

I am so happy for you and your family. At least now you may be able to get better help for Charlie.

 

I'm afraid we have a bit of a wait for our CAHMS appointment. I phoned them today and was told the waiting list is at least 5/6 months. However, we have had our last appointment with the private speech and language therapist, who has been great. She has given us so much practical advice on methods to help with his behaviours. So we shall wait for her report. Although she cannot give a diagnosis of ASD, she commented that he sailed through the standardised tests and therefore on paper looks 'fine'. She did tell us that high functioning/aspergers can pass all of the tests. However, he has so many other of the traits and behaviours so she said the whole picture needs to be taken into account. She is also going to refer us back to the OT for Ben's Sensory Processing dissorder as his needs are not being met with that at the moment.

 

Thanks for keeping me updated.

 

Have a great summer too!

 

Claire

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...