Research links gluten sensitivity to autism

This report is from Medscape Today and is about a study in PL0S One. Links at the bottom.

gluten freeA subset of children with autism have increased immune reactivity to gluten, but the mechanism of this increased reactivity appears to be distinct from that involved with celiac disease, new research shows.

The results also indicated an association between elevated antibodies to gluten proteins and the presence of gastrointestinal (GI) symptoms in the affected children.

“There is evidence that immune system abnormalities are associated with symptoms in a substantial number of individuals with autism,” senior author Armin Alaedini, PhD, assistant professor of medical sciences in the Department of Medicine and the Institute of Human Nutrition at Columbia University Medical Center, New York City, told Medscape Medical News.

“In addition, several studies have evaluated gastrointestinal symptoms and defects in GI barrier function in affected patients. Some have pointed to higher frequency of celiac disease, family history of celiac disease, or elevated antibody to gluten among autistic children, but these studies have been inconsistent about such associations,” Dr. Alaedini said.

Read the rest of the Medscape Today report here (You may need to register for free if the whole content is not immediately visible.)

The study was published online June 18 in PLoS One which is an open access journal.

I know many of you are not surprised by this report – do you follow a gluten free diet with your children? If so, what results have you seen? Leave a comment – we’d love to hear and share your views on this.

 

 

Is this ASD research a potential game-changer?

oxytocinThere is new research and findings about causes and potential therapies for autism every week, but the following caught my eye in particular. I’ve reproduced a section below and you can link through for the remainder.

The following article snippet is from Medscape Medical News reporting from the 12th Annual International Meeting for Autism Research (IMFAR)

 

The research has found that intranasal oxytocin appears to normalise fixated or restricted interest, a core deficit in autistic spectrum disorder (ASD).

This expands the spectrum of normalising effects now being reported for intranasal oxytocin, essentially “completing the picture” of how the neuropeptide ameliorates the 3 key distinguishing features of ASD.

“In autism, there are 3 basic deficits — social communication, repetitive behavior, and fixated or restricted interest, where children get fixated on a particular pattern or sensory stimulation and have difficulty paying attention to other, more socially relevant cues,” Lane Strathearn, MD, PhD, assistant professor of pediatrics, psychiatry and behavioral sciences, Baylor College of Medicine, Houston, Texas, told Medscape Medical News.

“So this is the first time that this particular aspect of autistic behavior has been examined in relation to oxytocin, and we’ve shown that oxytocin has some effect on all 3 aspects of autism behavior, including now fixated interest.”

The study was presented here at the 12th Annual International Meeting for Autism Research (IMFAR).

You can access the rest of this article on Medscape here although you may need to register for free first.

When you’ve read it, do come back here and leave your views – is it just more of the same or do you think this is a potential game-changer?

 

SEN protection to age 25 – unless you go to university

I’ve been pondering on the SEN section of the Children & Families Bill for a while and I am perplexed by what seems to be an anomaly for some 18-25 year olds.

One of the aims of the extension up to 25 is so that young people can avoid a ‘cliff edge’ and they are supported through further education and training. If a young person with SEN is what is termed ‘NEET’ or ‘Not in Employment, Education or Training’, it is intended that they will be encouraged back into the system with a reinstated Education, Health and Care Plan.

Apprenticeships will be covered by the EHCP, as will further education. But not Higher Education at universities. I realise that most universities have pastoral care services, with lots of advice available, and a browse through several university websites reveals an impressive array of help to ensure equality of access and even counselling services.

sad studentBut what bothers me is that without an EHCP, it isn’t statutory. So, depending on which university you choose, you may or may not get the support at a level that would meet the same criteria or above as might be set out in an EHCP and the legal backing to make sure that this happens.

And if there is no mandated regular review, it will be much easier for a student to fall through the cracks. For example, a young person with Asperger’s, desperate to fit in, initially gets help and is thought to be doing well and there is little concern for his well-being. But in fact, they begin to struggle socially and then academically and then mentally. They may be away from home, or uncommunicative or not wanting to admit they aren’t coping. The student’s difficulties are not flagged up until things have deteriorated significantly because the university is not under any statutory duty to monitor regularly or ensure his needs are being met.

Of course, at a university with first-rate pastoral care, this may well be picked up. But if it isn’t, then what? All the work, support and progress that has been done with the young person while they were under 18 will be jeopordised.

Naturally, there are difficulties in bringing universities into the fold. They  have their own ways of doing things. There is the Disabled Student’s Grant and lots of advice for faculty staff such as this provided by the Physical Sciences Centre. A student may also be out of his home authority, which brings its own difficulties (not to mention vulnerabilities).

But this SEN reform process is about ‘blue-sky’ thinking. The busy beavers at the DfE have already managed to bring in a duty on health to provide when they initially said it wasn’t possible. They managed to include Independent Special Schools when it was thought it would be a difficult hill to climb and they deserve much praise for this.

I have seen that there are many bright young as well as more experienced brains in the DfE with tons of energy working on this reform – I bet if they were set the challenge of bringing in universities, they could do it.

Otherwise it just seems to me that if you’re a practical sort and opt to take on an apprenticeship, your SEN will have the legal protection and support of an EHCP. But if you’re a geeky, academic type who wants to go to uni, well, er, good luck with those special needs. Just make sure that the university you choose not only has the course you want but the pastoral support as well, because you’ll have no legal redress through a tribunal.

An article in the Guardian in 2010 highlighted the difficulties faced by students with disabilities. I believe that having universities covered by EHCPs could boost the number of disabled students finishing their studies and thus being better equipped to lead a productive and rewarding life and less likely to be unemployed.

Maybe my fears are unfounded – my boys are below university age but are in the GCSE stage, so it isn’t a million miles away. I would really like to hear about your experiences on this and whether you think universities should be included in the EHCP remit.

*Addition: This article in the Guardian underlines my point: If the EHCP covered universities, it may well be a different story for the students in this story

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

Ten tips when your child is newly diagnosed with a special need or disability

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He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

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Can you help with Pathological Demand Avoidance Research?

I was checking the most frequently used search terms that brought people to my site the other day and one of the top ones was “Pathological Demand Avoidance”
I ran an article a while ago by Deborah Rourke about PDA and it still continues to be very well visited, so I know that this is an important issue for many parents who are seeking information about the condition, which is very under-recognised.
I would now like to introduce you to a mum who would like your help as she researched Pathological Demand Avoidance for her dissertation. Hannah Reynolds has a very personal reason for choosing the subject.
** Please see update at bottom**
***

Hannah Reynolds

Hi, my name is Hannah Reynolds and I am stuying for a MSc in Forensic Psychology at the University of Portsmouth. I am also mum to two daughters, one of whom I suspect may have Pathological Demand Avoidance Syndrome. I’m fascinated by this condition and, particularly, why some children with PDA behave very differently depending on the environment they are in – between home and school, for example (like my daughter!).

For my dissertation, I will be conducting research into this particular feature of PDA  and am currently looking for people who would like to participate in my study once it is up and running (next year).
So, if your child – with OR without an official PDA diagnosis – shows this difference in behaviour between environments, please send an email to hannah.reynolds@myport.ac.uk and I will add you to a database of participants.
I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!
Many thanks
Hannah 🙂
** Update from Hannah January 2012***
It has been necessary for me to tweak my project proposal (this is common in the early planning stages) and, though I will still be researching PDA, I will be conducting a more in-depth, qualitative study into parents’ and teachers’ experiences of a child with this syndrome. In a couple of months, I will post an update on this website (thank you very much, Tania!) to advertise for participants so please check back for this.
I am very grateful to those parents who have already emailed me and I would like to hold on to all details for any future research I might carry out in this field. Please let me know if you would like your name removed. To any parents who would like to be considered for further research on PDA, please email me – hannah.reynolds@myport.ac.uk – and I will add your name to my database.
Many thanks for your time and don’t forget to keep checking for updates!

I knew it was my fault…

Of course it’s our fault..

Mother’s antibodies may contribute to autism

Fri Apr 24, 2009 8:18pm EDT

NEW YORK (Reuters Health) – While a mother of an autistic child is pregnant, she develops an immune response to her fetus’s brain. As part of that immune response, her body develops antibodies that can attack the fetal brain. Now, in new research in mice, scientists have discovered that the mother’s fetal brain antibodies are circulated back to the fetus through the placenta, possibly triggering inflammation in the brain that could eventually result in autism.

http://www.reuters.com/article/healthNews/idUSTRE53N55320090425?feedType=RSS&feedName=healthNews