ASD & Bowel problems NHS

My son is 10 and has been diagnosed with ASD and motor/vocal tics. He has been suffering from bowel issues for about 3/4 years but only recently did I realise there is a link between ASD and the gut so his psychologist has only been focusing on the ASD and we have been seeing a paediatrician about is stomach. He suffers from chronic loose stools and can spend hours on the loo with an upset tummy. We are currently under the hospital but I'm getting frustrated that the consultants seem to dismiss the issue as trivial. We last had an app in Feb and the next one isn't until May! Has anyone else had issues with the NHS taking the bowel issues seriously? I'm definitely going to mention the ASD next time we go. I'm starting to lose faith in the NHS as it's been three years since I first raised it with my Dr and they have only carried out a handful of minor tests in all that time. They seem to think that because he's growing and putting on weight he's fine 

  • Hello,

    Bowel issues and ASD are very closely linked. You may like to watch this video.

    www.youtube.com/watch

    This issue of bowel problems is generally centred on Anxiety, as the stomach is the seat of emotion. Anxiety and ASD also go hand in hand, so in my view the idea would be to support the Anxiety as a priority, so as to reduce the episodes.

    I also have ASD and suffer with bowel problems myself, so I do appreciate how distressing this can be, but I would look at addressing it sooner rather than later, because prolonged issues can escalate to a more serious bowel condition.

    Your Dr's reluctance can be due to lack of understanding or due to the fact that he realizes that it is unlikely to be a more sinister reason for your sons problems. Most Dr's would view his condition as psychosymatic, but that does not excuse poor support or indeed, advice for you in how to help your son and certainly doesn't take into account the more long term issues that could occur if it is left unaddressed.

    For my condition; and that of an undiagnosed ASD relative I cared for, (She later went on to develop diverticulitis), I had to look at a number of issues to help. Initially, we started with a food/stool diary, to try and ascertain if certain foods and medications also affected the bowel. Those with ASD can; but not always, suffer with intollerances to certain foods. This proved to be the case, as she was quite sensitive to two major food groups and one medication she was taking. With the help of a dietician and her GP we made small adjustments, which improved things quite dramatically, but I should stress, that this should be done with support of someone who is qualifed and aware of your childs ASD diagnosis.

    With regard to the anxiety, things are much more complex. Shock (Change of plans) or anxiety over School are the primary causes sited by parents when a child experiences bowel issues. For me this was certainly true. Every Sunday, I was either sick or unwell with stomach pains. Controlling or reducing anxiety in someone with ASD, can be extremely difficult, especially when it's not always possible to totally eliminate the cause, such as with School.

    I've only managed more recently, to look at my issues with regard to anxiety and really only had some success through 'Mindfulness training.' I know your son is still quite young, but if you can explore this now, you may have some impact on the severity of his symptoms.

    'Mindfulness' is about acknowledging how you feel during any one moment, it's not about supressing your thoughts.

    By definition, many with ASD have cyclic thoughts which can initiate, prolong and escalate physical symptoms. By recognising our thought patterns and learning to acknowledge them, it can reduce their negitive effective on us.

    It may sound far fetched, but many with ASD and other mental anguish issues, are responding really well to this type of treatment. So much so, that some health trusts are incorporating this therapy approach into general practice and will refer you for treatment. This is proving not only to reduce the mediction bill for some trusts, but patients are reporting greater longterm, improvement and well-being. Practiced regulalry, things could improve dramatically. I'm currently doing this with my son in order to help him with similar anxiety issues, but we practice at home together and not in an NHS setting. Books can be brought on the subject to help if you wish to do this at home.

    Please be advised, I'm not a practitioner or medically trained in any way and would always advocate you seek professional advice in the first instance, to rule out more serious illness, but if all else fails, you may wish to look more closely at the mind, body links that effect your son and try some of these techniques to help.

    I wish you all the best.

    Coogybear

     

  • A diagnosis of a psychosomatic illness or physical illness should only be given when all necessary medical tests have been done.  Endoscopy depts carry out tests which can inspect the stomach + intestines inc the colon.  These tests could highlight : ulcer, diverticulitis, chrone's disease, ulcerative colitis. 

  • Tics are associated with electrolyte imbalance, which can be caused by diarrhoea. I have had similar gut problems for years and get a lot of muscle cramps, and find electrolyte supplements helpful. My problems were dismissed as IBS/psychological despite a family history of bowel cancer, but was eventually diagnosed with this: 

    www.dailymail.co.uk/.../Bile-acid-diarrhoea-For-40-years-doctors-said-I-IBS-In-fact-hormone-problem-cured-simple-pill.html

    www.theibsnetwork.org/.../bile.pdf

    I knew that going to the GP with a self-diagnosis from the daily mail website was not a good plan, so asked first for a referral to a dietician for eating problems, who wrote to the GP advising a referral to a gastroenterologist, suggesting this specific test. Dieticians tend to be more open minded and knowledgeable (in my experience) but they cannot make referrals for tests directly.

    Doctors are very helpful now I have been diagnosed with something, but it took a lot of hassle. I ask for copies of all test results/letters, and communicate mainly by email, rather than saving it up for the appointments, when I can get stressed or forget things. 

    I don't believe gut problems are the "cause" of autism, but there is growing evidence that the health of the gut affects the whole body including the brain, and the ignorance of some medics is astounding. 

    I recommend these websites

    www.treatingautism.co.uk
    www.espa-research.org.uk
    questioning-answers.blogspot.co.uk

    good luck!

  • Bowel problems and ASD are commonly linked but the problem is that there is no real good science that can help with working out why there is a link. Dr Wakefield was investigating this when he got into trouble with making up his data in the MMR scandal.

    The stomach is a very physical thing and it responds to what is put into it but it also responds to our stress levels etc.

    Possible causes of problems include

    Diseases such as Crohn's

    IBS due to stress/anxiety

    Food allergies and intolerances - food that sounds healthy and good can actually be problematic for some people - I've discovered that I have Pollen Fruit Syndrome which means that I can't eat apples, tomatoes and other items that I've always thought of as simply healthy.

    I would agree with Crystal in that a diagnosis of psychosomatic disorder can only be made after other more physical problems have been eliminated from the enquiry. I would be surprised if the gastro consultants will be interested in, or be able to do anything with, the knowledge that he has ASD.

  • Previous post disappeared when I tried to edit it for clarity.. so apologies for duplication if it reappears! 

    If you are interested in the gut/brain connection this website is brilliant. questioning-answers.blogspot.co.uk

    And there are lots of resources on these websites:

    www.espa-research.org.uk
    www.treatingautism.co.uk 
    http://fedup.com.au (thanks RS for that link!)

    I have this condition
    www.theibsnetwork.org/.../bile.pdf which was dismissed for 25 years as IBS/psychological.

     

  • Brillliant info stateofindependence,

     Always handy to have extra info to read through.

  • Just spotted this link about probiotics and autism/GI issues - from a science journal. The mainstream are starting to catch up, but slowly!

    www.ncbi.nlm.nih.gov/.../PMC3205659

    If anyone is interested there is a research project run by Kings College London to map the gut microbiome. It is about £70 to participate and you get a printout of the types of bacteria in your sample and the proportions in which they are found. They don't give medical advice but the data may be useful to give to a dietician or nutritional therapist.
    http://www.britishgut.org

  • My friend has just sent me this link she found.

    www.disabilityscoop.com/.../

    Hope it's informative.

    Coogy