autistic spectrum disorder

Leave a comment Posted on Autism, Research

Looking for parents of children with autism! Please help a student at The Irish Centre for Autism and Neurodevelopmental Research with a survey.


Over the last

Irish Centre for Autism and Neurodevelopmental Research

Irish Centre for Autism and Neurodevelopmental Research

year we have help promote a number of research projects run by the Irish Centre for Autism and Neurodevelopmental Research (ICAN) . Which is part of National University of Ireland.

A few days ago one of their PhD students, Arlene Mannion, contacted us to ask for some assistance from our readers with a survey she is running on sleep problems or gastrointestinal symptoms in children with autistic spectrum disorder (ASD).

It would be great if you could help her with the research as we think it may prove very useful to all the ASD community going forward.

Mannion writes “Does your child with autism spectrum disorder (ASD) experience sleep problems or gastrointestinal symptoms?

Some children with autism have both sleep problems and gastrointestinal symptoms, while other children have one of these issues or none at all. The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway is interested in hearing about your experiences with your child or adolescent aged 3 to 17 years with autism. We are interested in understanding how sleep problems and gastrointestinal symptoms affect both child and parent. Even if your child doesn’t have sleep or gastrointestinal problems, we can still learn a lot from your information on why some children have these issues and others do not. If you wish to participate, please use the link below.

https://docs.google.com/forms/d/1rdm3IrSWzZcrG14jezW1FjrjoF5T62zUH4cX26ecs2k/viewform?c=0&w=1

If you need any more information on the survey you can contact Ms Mannion at a.mannion3@nuigalway.ie.

Thanks very much in advance!


8 Comments Posted on Autism

Autism! Should Asperger’s Syndrome have a separate diagnosis from other Autistic Spectrum Conditions?

Autism Acceptance

Autism Acceptance

When our son was being diagnosed with Autistic Spectrum Condition (ASC) nearly seven years ago now; one of the points of discussion with various healthcare professionals was the terms of reference of the diagnosis.

By that I mean what sort of label would our son be given.  Aspergers, autism or the then unknown to us Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS) were all explained to us.  But we were told that we would not be given an Aspergers diagnosis.  Why we asked?  The answer was simple.  The local council say Aspergers as “not a problem”  and this would not fund and treatments or early interventions.  Therefore the local healthcare professional always diagnosed with the label ASD. In fact our son has classic autism so no problem there.

At the same time in America a different process but with a similar outcome was underway.  In fact this was the removal of Aspergers as a diagnostic category in and of itself.  You can read us more about it here http://www.livescience.com/37333-dsm-aspergers-disorder.html.

At the time there was some sharp discussion about the issue within the autism community but quantitative opinions seemed to have been ignored.  So we though it would be useful to run a  poll trying to see if there is a consensus view from the autism community.

We would be very grateful if you could take part in the poll below.  Please use the comments box to share your view and reasons behind it in more detail.

Many thanks in advance!

YvonneScott1 I am undiagnosed , but having gotten to the age of 64 please believe me I know I have asperges . I have struggled all my life trying to copy other people’s responses . Since turning 60 I seem to have come to the conclusion I am just who i am and I’m now comfortable with being “different” however I think if I could officially identify myself as having asperges it would make me more comfortable.
JaneRitchie I have 2 sons, my 8 year old has a diagnosis of high functioning autism, where my 6 year olds diagnosis states he is on the autistic spectrum with aspergers. Both are very different children with very different support needs, so I am grateful their bits of paper state they are in different bubbles.
sneedley13 I agree that there should be a general heading, but I do think each ‘area’ should have its own diagnosis, especially when it becomes obvious which way the child is tending. My son was diagnosed ASD, but when he was assessed by CAHMS, they told us that he had markers for Asperger’s, Autism and Dyspraxia, as well as being mildly Dyslexic. We were told that because there were more markers for Autism than any other ‘area’ that is the diagnosis they would give although we were given info about Asperger’s and Dyspraxia too.

I think the biggest problem is that, while we can all compare behaviours/traits/issues, no two ASD children are the same, which make diagnosis and therapies all the more challenging. We have found that we just try what we think might work, and if it doesn’t, we try again. We are very lucky that Connor has an excellent TA at school.

@everything I really feel for you, and shed a little tear when I read your post (and please don’t take this as condescension, I can assure you it is not!) I cannot imagine what your day-to-day life must be like, and I can completely understand your frustration around us complaining about things that must seem almost trivial to you. But please do NOT apologise for ranting, that is exactly what these kind of support groups/sites are for! Stay strong, and God bless
faithfuldad I think there can be a general heading, yes, but each subject should have its own separate and distinct diagnosis. ‘Specialists’ have had difficulty assessing our son and have given him different assessments over a period of 5 years. The only agreement btw their assessments being that he had learning challenges. A lot more attention should be paid to deeper research in this area and we are keen on being a part of it. Our hearts and hands go out to all parents and children faced with this challenge. We hope that all will go through this with faith, commitment, encouragement and especially positive results for both children and parents.
CathandLogan In reply to momof2asdkids.Unfortunately there are alot of aspie children who have an asd diagnosis just because they can get better funding that way. If the doctors are going to have to abide by the rules around diagnosing then I think it is a good idea. And sorry to say @mumof2asdkids but it would be very likely that your child would be put into hf asd or aspie group. and alot of parents will resent this too. My son is mid range asd. Non verbal and only will be able to attend a special school, with little expectation to achieve. I too have to wonder what will happen to him when I am not here to look after him and he too will need someone to care for him for the rest of his life. Those with kids at school have no idea how lucky they really are and really have no way of understanding what it is like to have a fully disabled child.
momof2asdkids In reply to everything.everything  I Agree, there needs to be a separate diagnosis for each. My ASD child doesn’t have classical or severe autism, but he does have moderate ASD and because the school system can’t “see” his disability, they are choosing to pretend like it doesn’t exist. He stims in class, he is clearly different than the other children, you can’t understand him when he speaks and he does more screaming than speaking, but because he can memorize letters/numbers/words/flash cards they want to slap a Aspie label on him and he just *isnt’* there. I would love for them to have a separate HFA/Aspergers diagnosis just so we can bring his ASD diagnosis to the school and tell them “look, he’s not HFA/Aspie, so you need to help him and not tell us to wait it out”.
tjnel In reply to everything.everything I totally agree. My son has what they call mild to moderate ASD, but I don’t see him as having autism or being autistic. It’s confusing for people who aren’t in this world, as soon as they hear the word Autism they think ‘Rainman’. Yes our son has issues with coping, but it’s manageable for us. Most of the time we can reason with him. I have never had to clean poop off the walls. What my son has, and what your daughter has, I believe, maybe on the same spectrum, but it’s not necessary to put them in the same box. Why they have to change things just when they are being recognised is beyond me. I view Autism as being a bit harder to deal with than what we have to deal with. We got lucky. I guess it’s a convenience for the medical profession to put all these labels under the same umbrella.
everything I don’t want to undermine the struggles aspie go through. I know it’s important for them to get therapy and that’s why they classified it this way so there’s a nice check box next to the dr forms so they can get help as much as “regular” ASD kids.
HOWEVER, I do not relate to HF autism or asperger’s kids. This is not my world. it is super frustrating to go into threads where they are so up in arms that the majority of ASD kids were labeled mentally retarded and they were offended. Well, before aspies were grouped in yes.. 70% had that label and it’s not awful it just is and we work through it and use our therapies. Or they get offended that people want to cure autism or this or that… they just don’t GET what it’s like to have a LF/severe/ classical autism kid and that is super frustrating.
So yes, I would VERY much like to not be grouped together. When I go to a forum for support it’s usually HF people who don’t get anything I am going through and it is beyond frustrating!  My life isn’t about quirkiness or even  not enoughfriends at school, or being too smart, or not socializing.. my life is cleaning poop off the walls.. wonder  how I am going to deal with a period in a diaper when she turned 12. Knowing she most likely won’t ever speak, use an ap to speak, point, marry have kids be toilet trained.. ever know that I am her mom. I wonder if she will every be able to use a spoon or drink without choking every day and when I have those concerns people just say optimistically give it time. Those people don’t get it either. You can see your future at a certain point and it’s fine but don’t belittle the situation. It’s hard! I pray my kid becomes and aspie but probably won’t. She will have the mentally retarded label and the severe label and the non verbal label and that’s our life. We just don’t relate at all to doesn’t have enough best friends. My kid could care less about friends. Wouldn’t be able to learn their names anyway.  I am having huge issues with this lately so hence the rant. Sorry but it’s true.