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Advice needed...how important is a diagnosis?

post #1 of 6
Thread Starter 

So, I would really appreciate some insight here.  We are kind of at a cross road with my 3 year old son.  He has always been rather high needs, with food issues, constipation, and related behavioral issues.  I haven't yet been able to get him to a good baseline, and I am running out of steam.  Right now I have decent luck with a gluten free, dairy free, corn free, etc, etc, diet and he seems pretty good...but as I said, still has GI issues, still spirited.  It's not in and of itself alarming for a 3 year old.  But not normal either.  A few months ago, toward the end of my second pregnancy and during her first few months we fell off the wagon with our diet.  DS started to develop some sensory issues, anxiety, rigid behavior, trouble with change, trouble  being social, and some other Asperger-like symptoms.  


Since then I have re-eliminated most trigger foods and most of the sensory and more Asperger-like issues have diminished significantly. But we are still having problems. I have a pretty strong feeling that if we weren't actively managing his diet that he would present with Aspergers...I think.  


So how important is the diagnosis? I'm pretty sure that with his current diet he wouldn't get a diagnosis, so if I thought that he needed a diagnosis, I would basically have to reintroduce all of the trigger foods, which would cause him really severe discomfort and make him toxic, right? Is it worth it to do that to him? What if after all that he doesn't actually have Aspergers? What if he does? How much else could I really change to help him feel better?


Any insight is appreciated.  Thanks.

post #2 of 6

In my state an Asperger's diagnosis will not get you much in terms of service, but you may still get early intervention and free preschool in special education.  At the least you can get an IEP.  Early education was a lifesaver for my son, so I advocate for it to anyone anytime I can.  Through networking with his therapists I also learned a lot of ways how to help my son besides the diet.  I had a support group at his therapy clinic and I met a lot of moms who faced similar challenges who I am still friends with today.  Autism can be very isolating and you will need these friendships.  Moms will be in the know about a certain program, therapy, supplement, conference, book, etc. way before the professionals know.  You need your moms and therapists for support and education.  Later on your child will want to connect to someone like himself.  Online groups are helpful but only a small part.  The family really needs a team.  You deserve that. 


In my opinion a diagnosis is helpful for the services it can get your child.  I hear many parents say they don't want the services or need the services.  Understandable.  For example I am totally against ABA and would never choose that for my child.  But the least a parent can do is check out what's available and then reject it instead of rejecting it without even being truly informed.  Your child's well-being can really be helped.  Try some therapies, find a therapist who is a good fit.  If it is not for your family then let it go.  But this is a critical time in development so I would encourage you to talk to a developmental pediatrician and/or your state's version of Regional Center.  Also FYI many parents have to fight to get the diagnosis--they are not handed out like candy as my mom seems to think. I have a hard time understanding why parents are so reluctant to get a diagnosis but its been awhile and I forget how scary and final it can be.  Let us know what ways we can support you whatever you decide.  Best of luck to you and your child.

post #3 of 6
Kathteach pretty much summed it up. Just another voice saying yes a diagnosis is useful. Establishing early eligibility for needs you may have later is a good idea, IMO, and 3-6 is a really important window of time for trying interventions and getting a good foundation of skills in place.
post #4 of 6

However, if you are finding that the "dietary" treatment is key to the change in his behavior and learning then do NOT reintroduce foods to aggravate the symptoms, making him qualify for a diagnosis, which, I think after reading your post, that you may be contemplating.


This as others have already said, is an important time for growth and development in a child.  It can often take 6 months to "dry out" from gluten.  That's a long time for a young child to be unavailable for learning.


Get an evaluation for your child while on the diet, and likely, issues with pragmatic language and sensory issues will still be apparent.  Consider yourself LUCKY for having dodged a very bad bullet.  Spectrum disorder from age 6 to 9 is a very HARD thing to manage as a family.  Accept whatever services are available to your child while on the diet, even if it's none....and feel very happy in the knowledge that you've discovered dietary interventions that will help your child.  Yes, it is a ton of work.  But, i've learned the hard way, that I need to trust that the phenomena that I have seen in front of me is real....the wrong kind of food is like poison to my children.


My son has now been on a gf/cf diet for 3 years, detoxed with long term homeopathic treatment (CEASE), and has officially fallen off the spectrum as of his most recent neuropsychiatric evaluation.  He is still "quirky".  He has issues with variable attention and "dependancy" on adult support to navigate complex social and emotional situations in school and at home, but, he reads a room, he reads facial expression, he makes wonderful eye contact, and is growing and shedding former symptoms all the time. 


For example, one concrete way we have seen a change in his testing, is his working memory, measured by the weschler iq test, which went from the 9th percentile to the 85th percentile in 3 years time corresponding to dietary changes and detox.  So, when I caution you, that if you go back on a "normal" diet it could make your child unavailable for learning, in my experience it has been proven by my own son's testing.  Working memory as measured by the weschler is one of the key measurements to determine a child's ability to build on day to day learning to form abstract thought process. 


Just wanted to offer up this perspective....

post #5 of 6
Thread Starter 

Thank you all so much for your input, it is really helping me to consider our options.  @livinglife, I think you pretty much summed up what I have been contemplating and the tear I feel.  He is definitely still a bit quirky, but he has made dramatic improvements over the past few months of clean eating.  You pretty much nailed what I was trying to determine - would it be worth the misery to get the diagnosis, and I want to say no, but I am afraid that (like @sageowl said), if he doesn't get the diagnosis I am going to miss out on having access to tools that can really help him. 


@kathteach you bring up a lot, a lot, a lot of good points. There is a lot of apprehension about a "label" especially from my husband...but all things considered I feel silly contemplating this because I feel like he is such a borderline case...but I don't know if I am in denial/I have blinders on.  I feel like if his issues are disappearing with diet alone, then he can't really have it.  I don't know.  But at the same time, I crave having the real life support from others with a similar background, because although we are really lucky to have a pretty awesome group of like minded parents/kids, no one can relate to what we are going through...


I wish that I sought help with early intervention before he turned 3.  And from the sound of things it will just get harder if we wait longer.  So I guess if I can control this with diet, keep going with that, and if symptoms persist over the next month or so, then we can get an evaluation as is to see if there aren't tools we could be using to help....


Awesome advice and thinking points, thank you so much!

post #6 of 6

Your welcome Babysmurf....I want to add that this is the "cure" that people talk about when referring to the gf/cf diet being a partial or complete cure for spectrum disorder.  This is not true for all children.  If you do research on your own regarding the different metabolic "pathways" that can be blocked in those showing spectrum disorder you'll understand with more depth that there are other biomedical ways to help children who don't respond to the diet.   Does that mean he didn't have autism?  Our current ability as a society to conceptualize autism as something other than a neurodevelopemental disability hampers a discussion around this.  There is no framework for understanding this offered by conventional wisdom. 


Also don't hesitate to seek services regardless of whether a label will apply.  Many children qualify for services through their local school system for OT when it is clear that they have gross or fine motor delays, and speech, when it is clear that they have pragmatic language delays.  As he unfolds, there may be many services he will indeed need and benefit from and his preschool teachers can help you understand what may or may not be needed.

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