Guest guest Posted September 1, 2010 Report Share Posted September 1, 2010 The ADOS (or ADOS-G which has superceded it for the past few years) is not a diagnostic tool for autism. A further ADOS wiull not clarify much. It only assesses current behaviour so gives an indication of what the person currently does. ICD and DSM criteria bot rely on developmental history as a critical part of the picture. An ADI-R would help to clarify things.Hope this helps.Ken From: K <kjaworowska@...>Subject: Diagnosis dilemnaAutism Treatment Date: Wednesday, 1 September, 2010, 20:58 My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was "monitoring" Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. I feel I have 3 options: 1. refuse the test (but then would they get off our back?) 2. go for it and if I see Jakub is not acting like himself leave 3. pretend I've never received the letter Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. Kasia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2010 Report Share Posted September 1, 2010 Thank you Ken. They interview us before, not sure if it was ADI-R. I think my real question is: what if they say Kuba is autistic and I don't agree with that. Can I ask them not to share the diagnosis with anyone else. Can I fight the diagnosis? On one hand I would love to have the " all clear " from the communication clinic because that would stop everyone from wondering is he or isn't he autistic? I would like to have that statement to. On other hand I'm more and more aware of the limitation of the diagnosis of autism (not sure anymore if there is a single thing called autism) and have even lessfaith in the health professionals. Kasia > > From: K <kjaworowska@...> > Subject: Diagnosis dilemna > Autism Treatment > Date: Wednesday, 1 September, 2010, 20:58 > > > > > > > > > > > > > > > > > Â > > > > > > > > > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some > auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > > I feel I have 3 options: > > 1. refuse the test (but then would they get off our back?) > > 2. go for it and if I see Jakub is not acting like himself leave > > 3. pretend I've never received the letter > > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > > Kasia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Hi Kasia Stall them -absolutely. IMHO What I find amazing is how you're keeping to keep a clear head with all this going on. Getting a child through any op is horrible. Poor Kid. Stress. They are pressurising you for a diagnosis because they want to squeeze him into the system and that's it. Well your child might be a number to them but he's worth fighting for, every child is, because as you've seen its not as clear cut as it would appear. An education for a child who has compromised hearing is very different from one with autism. Even if he is on the spectrum, which is in doubt, to help in the right way he is going to need a great deal of speech and language therapy from a therapist, 1-1 (i.e. not assistants/teaching assistants) who has an understanding of children with hearing loss and auditory processing disorder. You might want to educate him at home for a while and fight for funding to do this which will give you flexibility on the therapy side, to find the right person, because Speech and Language Therapists are hard to come by in schools, special or otherwise. If you're at home, you can use funds they supply to find your own. If you get the wrong diagnosis Jakub could be placed in a special school, or mainstream with support, where they do not understand the impact of his other problems and fall further behind, so I totally understand your concerns. I'm presuming there is no detailed Statement in place yet - if there is you will have to fight to get this kind of education in the Statement. So you need to buy time on this diagnosis. You could say that you would like to revisit the diagnosis in x amount of time, because the hearing loss he has suffered is affecting how he presents and responds to tests,and you would like to give Jakub time to recover from the op? March this year isn't long for a person to adjust to grommets. You could say you have noticed deterioriation/very intermittent responses. That way when you do need to go back you will have an open door and everyone has saved face. Can you ring the ENT clinic and ask them when typically a child might have recovered from the op first? Tell them you have noticed deterioration? Then when you have got the time you need: I would then press for your Son to be referred to Great Ormond Street or a Specialist children's hearing hospital for a detailed exam if you have not done that yet. Tell them you are greatly concerned and you do not feel this is untoward (it isn't). What you will do is gain evidence for Kuba's diagnosis, however this turns out. They usually book in a follow up appointment after assessment which takes ages, so you can buy yet more time. You can go privately if you have the money. Jakub's going to need a lot of help in this area and without evidence it will be hard to get. If you can afford it then I would be looking at an independent point of view on the diagnosis, not in-depth at this stage - just a brief interview with an autism specialist to ask their opinion on how Jakub presents, given all the information. Not a detailed and costly report at this stage - you could get that later if needed(!) Someone mainstream enough to command respect from these people and if that person says the right things, you can call on their opinion in conversation/letters. Lorene's opinion would carry a lot of weight with me, but usually biomed doesn't go down well with mainstream medicine. Sounds like they are rushing things to me particularly after Kuba has had his grommets put in place, a wrong diagnosis isn't the way to go for his education and his life. They are wrong to put such pressure on you. If you can afford to do so without compromising any other education he is receiving, buy time. Nightmare - I'm really sorry for you and hope Jakub is picking up and doing OK at the moment. Eileen xx > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > I feel I have 3 options: > 1. refuse the test (but then would they get off our back?) > 2. go for it and if I see Jakub is not acting like himself leave > 3. pretend I've never received the letter > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > Kasia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Sorry Kasia sorry if my post wasn't clear : Press the ENT to refer you to Great Ormond St. Not the guys who are backing you into a corner. Eileen xx > > > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > > I feel I have 3 options: > > 1. refuse the test (but then would they get off our back?) > > 2. go for it and if I see Jakub is not acting like himself leave > > 3. pretend I've never received the letter > > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > > Kasia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Hi - just wanted to say this struck a real cord with me. My son is nearly 3 (how old is Kuba ?) - he was in the process of getting a diagnosis which was leaning towards ASD / Aspergers. He had recurrent glue ear from a baby and has just been clear (without intervention for about a year now. We also began bio-med and have seen huge improvements although he does still exhibit some traits - odd behaviours they are much less in frequency. We have only been on biomed 4-6mnths anyway - so waiting to see the impact of that. As you say too - my son would be very much on the high functioning side of ASD and I think it is this fact that makes me keen to delay a diagnosis which he cannot then shake off down the line. NHS do seem keen to DX - and like you I have decided to delay any further testing to give him some time to mature and see where we end up Good luck - sounds like we have some similarities so will watch your progress with interest x > > > > From: K <kjaworowska@> > > Subject: Diagnosis dilemna > > Autism Treatment > > Date: Wednesday, 1 September, 2010, 20:58 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > > > > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some > > auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > > > > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > > > > I feel I have 3 options: > > > > 1. refuse the test (but then would they get off our back?) > > > > 2. go for it and if I see Jakub is not acting like himself leave > > > > 3. pretend I've never received the letter > > > > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > > > > Kasia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Kasia - I'd play for time. I would highlight why I didn't want the diagnosis to go ahead so your concerns are clearly stated so you have some comeback. From what I know a " lay " practitioner can be trained to administer the ADOS. Often therapists who aren't in the clinical field use it. Don't know if you've seen it but from where I sit its the kind of test most people wouldn't struggle that much with and to my mind extremely subjective. (But so many of the tests are anyway.) Probably Lorene was giving an opinion rather than a diagnosis but I take Darla's point. I thought she had a child with Autism as well or did I imagine that? From my experience and we're all different, I got a more honest opinion (and as it turned out, a more accurate one) from people like Lorene than those in developmental paediatrics in teaching hospitals, who are a little more cautious for a variety of reasons some of which you state Eileen > > > > > > My local communication clinic is on a mission to diagnose Kuba. We had > > our first pediatrician meeting in February 2009, she gave us an appointment > > for receiving a diagnosis in July 2009. In the time between those 2 dates we > > changed diet and started biomedical. During the diagnosis meeting they > > basically did a long interview with us barely noticing Kuba. We said Lorene > > did the ADOS with Kuba and according to it Kuba was not autistic. They would > > not accept Lorene's assessment . At this point we also knew that Kuba had > > constant glue ear but we knew nothing about the condition which was > > presented to us a minor problem. We went to the meeting prepared that they > > would give us a diagnosis, instead we were told they were not sure what his > > difficulties were and because Kuba was improving greatly, they wouldn't give > > us a diagnosis. After summer holiday, Jakub had another ear infection. Then > > we started ABA and our therapist said that she suspected some auditory > > problems because Jakub guesses a lot. We started thinking and reading about > > it and the obvious starting point was glue ear. We read that contrary to > > what we were told glue ear gives a lot of behavioural problems (sometimes > > similar to autistm) and if not treated in time can lead to auditory > > processing disorder. We wrote a letter to our ENT department (which was > > " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we > > are no longer willing to do so and requested immediate surgery. Kuba had his > > grommets inserted in March this year. They sent us appointment for ADOS when > > we were away on holidays. And they have now sent another appointment for > > September. > > > Sorry for the long history. As Jakub gets older its more and more obvious > > he is not autistic, but he hates the hospital and doesn't like being tested. > > I feel he might not behave in the hospital the same way as anywhere else. I > > also feel that even if he was autistic he is so high on the spectrum that > > the diagnosis at this point would not help him, especially in Scotland where > > I feel this diagnosis is an excuse for not doing anything about child's > > health or education. > > > I feel I have 3 options: > > > 1. refuse the test (but then would they get off our back?) > > > 2. go for it and if I see Jakub is not acting like himself leave > > > 3. pretend I've never received the letter > > > Thank you for reading and if you could suggest what you would do of the > > three, or can suggest any other options to us, we'd greatly appreciate it. > > > Kasia > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Thank you again Ken and everyone else. We are, at present, in touch with an Auditory Processing Specialist ising the Johansen Method. Helen, if you want to contact me offline, message me and I'll share info we gathered and the contacts we found with reference to glue ear/CAPD. Lorene was going through training in ADOS when she made the assessment of Kuba, and her diagnosis was confirmed by her tutors. I think she is fully qualified to do ADOS now, but it may be worth checking with her. Thanks again, Kasia > > > > > > From: K <kjaworowska@> > > > Subject: Diagnosis dilemna > > > Autism Treatment > > > Date: Wednesday, 1 September, 2010, 20:58 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some > > > auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > > > > > > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > > > > > > I feel I have 3 options: > > > > > > 1. refuse the test (but then would they get off our back?) > > > > > > 2. go for it and if I see Jakub is not acting like himself leave > > > > > > 3. pretend I've never received the letter > > > > > > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > > > > > > Kasia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Thank you again Ken and everyone else. We are, at present, in touch with an Auditory Processing Specialist ising the Johansen Method. Helen, if you want to contact me offline, message me and I'll share info we gathered and the contacts we found with reference to glue ear/CAPD. Lorene was going through training in ADOS when she made the assessment of Kuba, and her diagnosis was confirmed by her tutors. I think she is fully qualified to do ADOS now, but it may be worth checking with her. Thanks again, Kasia > > > > > > From: K <kjaworowska@> > > > Subject: Diagnosis dilemna > > > Autism Treatment > > > Date: Wednesday, 1 September, 2010, 20:58 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My local communication clinic is on a mission to diagnose Kuba. We had our first pediatrician meeting in February 2009, she gave us an appointment for receiving a diagnosis in July 2009. In the time between those 2 dates we changed diet and started biomedical. During the diagnosis meeting they basically did a long interview with us barely noticing Kuba. We said Lorene did the ADOS with Kuba and according to it Kuba was not autistic. They would not accept Lorene's assessment . At this point we also knew that Kuba had constant glue ear but we knew nothing about the condition which was presented to us a minor problem. We went to the meeting prepared that they would give us a diagnosis, instead we were told they were not sure what his difficulties were and because Kuba was improving greatly, they wouldn't give us a diagnosis. After summer holiday, Jakub had another ear infection. Then we started ABA and our therapist said that she suspected some > > > auditory problems because Jakub guesses a lot. We started thinking and reading about it and the obvious starting point was glue ear. We read that contrary to what we were told glue ear gives a lot of behavioural problems (sometimes similar to autistm) and if not treated in time can lead to auditory processing disorder. We wrote a letter to our ENT department (which was " monitoring " Kuba's hearing loss of more than 30 dB for over a year) that we are no longer willing to do so and requested immediate surgery. Kuba had his grommets inserted in March this year. They sent us appointment for ADOS when we were away on holidays. And they have now sent another appointment for September. > > > > > > Sorry for the long history. As Jakub gets older its more and more obvious he is not autistic, but he hates the hospital and doesn't like being tested. I feel he might not behave in the hospital the same way as anywhere else. I also feel that even if he was autistic he is so high on the spectrum that the diagnosis at this point would not help him, especially in Scotland where I feel this diagnosis is an excuse for not doing anything about child's health or education. > > > > > > I feel I have 3 options: > > > > > > 1. refuse the test (but then would they get off our back?) > > > > > > 2. go for it and if I see Jakub is not acting like himself leave > > > > > > 3. pretend I've never received the letter > > > > > > Thank you for reading and if you could suggest what you would do of the three, or can suggest any other options to us, we'd greatly appreciate it. > > > > > > Kasia > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.