claire4274

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

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. Let me know how you get on. Claire

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

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

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.

Hi, yes sensory processing is one of her specialities and yes Ben does have a diagnosis of it.

Yes

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

Hi Lynne I understand that SALT can not diagnose ASD. What we are trying to do is find out what, if any, communication problems is has, because we know to get a diagnosis of ASD he has to have problems with social and communication. The local NHS SALT has carried out one test (ACE), found huge differences between the scores, but will not carry out any further tests, they want to wait to see what CAHMS say. We are currently on the waiting list for our local CAHMS. It's a long story, but we have been fobbed off several times before regarding his behaviours because he is perfectly behaved at school. Because of this, no one seems to be listening to the problems that we experience. Claire

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! 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

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

Hi, We are currently in the process of trying to get our local SALT team to fully assess our son for Apergers syndrome, but have the feeling that we are not going to get the help we want. We live in the Tyne and Wear area and were wondering if anyone knows of a good private Speech and Language therapist who deals with ASD/Aspergers? Many thanks Claire.

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

Thanks for that. I will keep you informed. Claire

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.

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

Hi, just to let you know that SALT did the ACE assessment. Results were:- Sentence comprehension (complex grammer) 37th percentile, Inferential comprehension 91st percentile and Naming 84th percentile. Claire

I will contact her tomorrow and ask for a copy of the test results and what the assessment was. I will ask her if it is possible when she speaks to her colleague that his theory of mind & social and play skills can be tested. Claire.

Hi, just wanted to update you on our appointment this morning with SALT. We feel as though it was positive. She listened to our concerns and seemed to understand where we were coming from. She took loads of notes etc. We also gave her our list of behaviours that we see at home to take away with her, as there are too many to talk about in the session. She then did an assessment with Ben, although I don't know which one. After scoring it she gave us the 3 results. 1st score was in the 30's percentile and said that it was just within the 'normal' range. 2nd score was in the 90's percentile and 3rd score was in the 80's percentile. She said that she also noticed that he took quite a long time to process some of the questions. She said that she works with autistic children still at mainstream school who also score very highly like Ben, but wasn't sure if that was because of ASD or whether it was 'just Ben'. So she is going to talk to school next week to see if they are seeing anything, no matter how small. I explained that his teacher has seen his anxiety at school and also when Ben works in groups at school how he will withdraw if everyone is talking at him at once. Ben also commented to SALT he didn't like working in groups at school. She is also going to speak to one of her colleagues, the lady who went out to Ben's school last year and did an observation. She will then get back to us to discuss what happens next. Hopefully we may find what is causing Ben's behaviours. Claire

Thanks for that. I'll let you know how we get on. Claire

Hi, I have no idea what they are planning to test for to be honest. The letter from them says "the purpose of the visit is to discuss your concerns and carry out some assessment of Ben's speech and language skills, and discuss possible next steps." She is coming on Wednesday morning so I don't think I will have time to put anything in writing to them considering the bank holidays. Can I just ask what is ACE or CELF4 to test for exactly? What do they do? Just so I know what I'm asking for next week when she comes. Claire

HI Sally44, I shall answer your questions in order. Yes he started talking at the typical age. Yes he is able to understand pronouns and does refer to himself as I ,me etc. Yes you can ask him a question & he will give an appropriate answer, except when he is angry or in meltdown, in which case he will just grunt or growl at you. Social chit chat not so sure about, he will talk but a lot is him talking at you. Yes he will use language to request things. He does like to talk about the things he wants to and must tell you everything. If you interupt him he will still go back to what he was talking about. I don't think he has an unusal tone of voice. His volume can be set on loud a lot. He struggles with understanding our tone of voice ie. if you have a stern voice he will think you are shouting at him. He sometimes uses words from tv but doesn't repeat back sentances from it. He doesn't have an unusual accent. We are not sure about holding a conversation with peers, as we don't get to see that very often. Yes he can give understandable information verbally. He doesn't tell us often what has happened at school but when he does he will tell you loads. Yes he does have friends at school. He has told me after questioning him that they make friends with him not the other way round. Yes he can play with other kids. He tells me he wants them to do what he wants and that he often gets angry with them when they don't. As far as I know, he is included in play at school. As I said, school have no concerns and think he is fine socially. He tends to like to play on his video games or it tends to be what he has seen on TV. It always seems to be 'fighting' games. I often think it is things he has seen on TV. He usually doesn't let us watch him during play. He asks us to leave the room or goes to his room. He very occasionally goes to a friends house to play, usually in holidays. However, we don't live very close to other kids. He doesn't do things like if I said "Get lost", he wouldn't try and get lost. Sometimes he does ie. when with an OT she asked him to write the numbers 1-10. So he wrote one, two, three etc instead of 1, 2, 3. He gave me a scare once and I called him stupid (not nastily) because he scarred me and he got very upset saying that I was calling him stupid. We had to explain that I wasn't being mean. I think that he does get sarcasm and can be quite sarcastic himself. As I say the social and communication side we think is the least like ASD. If it is not ASD we still need to know what is causing the other behaviour problems and how we can try and help him. Many thanks. Claire

Hi, just wanted to give an update. We have a member of the local SALT team coming to our home next week to speak to us about our concerns and also to see Ben. So we shall see what happens with that. We have also been referred to CAMHS by our GP. Not sure how long the waiting list is but we are hoping the SALT will be able to tell us something in the meatime as this is the area we feel he fits the criteria the least. His teacher, who is great, also has told me she has no concerns regarding his communication and social skills. The only thing that she sees is his anxiety at school. She had to stop a SAT (optional SAT) at school this week because she could she how anxious Ben was getting. Hope everyone is well. Claire

Hi, we have been to see our GP this morning and explained our concerns and said that we wanted to be referred to GOSH. He seemed very interested in what the school thought and what he was like at school (which he behaves perfectly). We explained that our concerns were with him out of school and the behaviour that we see. I think he wanted to send us back to our local hospital for a 2nd opinion, which we are unwilling to do. I think because we have already been seen and had the ADOS and ADI, I feel as though he wasn't too keen to refer for the 2nd opinion. Anyway, after persisting he is going to speak to our local CAHMMS team and ask them what they thought. He will let us know after this. So it is just a case of wait and see. However, we are not going away as we need answers. I know that after speaking to GOSH if the GP refers the PCT have to pay for the referral, however if the local CAHMMS refer him then they don't have to pay. Unfortunately it's always about money. Claire

Hi everyone, we are going to the GP on Thursday to ask for a 2nd opinion regarding our son who is 8. We have had an ADOS and ADI last year and was told that he does not presently meet the criteria for ASD, but we may want to return for another assessment later on if he doesn't 'grow out' of his behaviours. Anyway after speaking to lots of other people, we believe that it may be aspergers. Our local SALT team after speaking to them believe it needs deeper investigation. We have lost all faith in our local hospital as we feel that our concerns have not been listened to. After speaking to someone on the National Autistic Society's helpline today, we have decided to ask our GP for a referral to Great Ormond Street (he already goes there for a physical condition called Ehlers Danlos Syndrome). We have also spoken to GOSH and they agree he is the sort of case that they would look at and informed us to go to our GP and ask for a referral or go through CAHMMs to get the referral. Just wondering whether anyone has experience with GOSH's Centre for High functioning autism? Many thanks. Claire