You really won't know until your child's diagnosis is complete. If that diagnosis is based purely on a pediatrician's screening or a developmental evaluation, then it is only partial. You need to find out if there are any genetic or neurological components, seizure activities, or brain abnormalities contributing to your child's autism.
You need a referral to a pediatric neurologist.
Your pediatrician may not make this referral on their own, because regular pediatricians are not always aware of the extent to which autism and autistic-like conditions should be evaluated. If you are not given this option, you'll need to press for it. (Another potential fight, I know.)
We were lucky. Leo's pediatric neurology referral was part of his evaluation at the Stanford Autism Clinic. The clinic staff referred us to an on-campus pediatric neurologist. This is what that doctor recommended for Leo:
- A genetic workup to rule out any of the many chromosomal conditions that can lead to, be comorbid with, or mimic autism.
- A pediatric neurology assessment, including a general exam and family history.
- An EEG to monitor our son's brain for irregular electrical activity (some kids diagnosed with autism actually have seizure disorders).
- An MRI to look for structurual abnormalities in the brain, such as demyelination.
The results: of course my son had no chromosomal or brain structure abnormalities. He had a bit of irregular electrical activity, but it was consistent with patterns seen in other autistic people.
The tests didn't tell us why Leo has autism, but they did rule out many potential causes and typical physiological issues. With no answers, no more "but what if he has?," our faith about continuing to pursue 1:1 behavioral therapy -- the only proven method for helping kids like Leo -- was renewed.
Organizations like Generation Rescue proclaim to know why your child is autistic, and what you can do: let them rescue your child from autism! Unfortunately they are full of shit, though not intentionally. While a small subset of children may in fact be helped -- though there is not yet any unbiased evidence supporting this claim -- "We might be able to help your child a little bit if you're one of the lucky ones" doesn't rally frightened parents like "We can cure your autistic child!" does.
The bulk of GR's focus is not on detailed diagnoses or helping to gain skills, but on these biomedial and dietary "cures." I think most of the biomedical supplements Leo used to take were a racket.
Some do have merit. Leo still takes daily doses of cod liver oil, calcium, probiotics (though we're tapering those off), and autism-specific multivitamins from Kirkland Labs. We retained those only after consulting with a medical dietician about properly supplementing my son's self-limited diet.
And while I think there's no harm in trying the GFCF diet (even though it didn't work for us), you need to know that it is a lot of work, especially during the initial transition from a regular diet, and because so many autistic children have limited diets anyhow. You also need to be serious about it for at least one year.
Even before your child's autism diagnosis is complete, you need to decide how you're going to help your autistic child make sense of this world. Behavioral therapy is the best choice, and you can do it *even if* you decide to swallow Generation Rescue's very expensive pills. But if you have to make a choice, put your money (or your school district's money) on the approach based on evidence, not testimonials.
Hooray for evidence based approaches!ReplyDelete
Kayla's pediatrician still doesn't think the actually has autism, even though she was diagnosed by a developmental pediatrician AND the experts at Kennedy Krieger Institute. Even though she lost all her language and social skills between ages 2 - 3. Even though she's non-verbal and flaps like a chicken. Even though she doesn't make eye contact or respond to her name. Even though she doesn't have any joint attention.
I should probably change docs, but the medical stuff he's good at. Autism stuff, not so much.
Children recovering from Autism with R.D.I. can be seen on Phil Commander's video series. He is Dad to Jake and on Dessi Mom's blog, "Miracles do Happen."ReplyDelete
Some kids do recover. Intensive ABA (high quality ABA, not the shit that is presented in some centers and public schools) and, for some kids, biomed interventions are extremely important. Some kids progress very slowly while others move quickly. There is no way of knowing when a child is young so it is important to get started right away. Keep in mind, just because biomed doesn't work for some kids, it has worked well for others. Just because a child is autistic does not mean they are clones of each other. Please parents, do your own research and don't listen to someone who bashes something just because it did not work for their child.ReplyDelete
@anonymous 6:59AM: Well said.ReplyDelete
I would clarify that I'm bashing people who claim biomed will cure *all* autistic children, thus hoodwinking vulnerable and frightened parents, and distracting them from ABA & related therapies.
I'm still skeptical about "recovery" claims. As you wrote, these kids are not clones of each other. I suspect autism currently comprises a variety of as-yet-undiagnosed syndromes or disorders (much like Fragile X used to in the general "mental retardation" or "developmentally delayed" pool). Once we're able to differentiate these disorders from each other, we'll see that the kids with "X" disorder have autistic-like symptoms in early childhood, but naturally lose most of them by age five or six. Currently, those are the kids people describe as recovered. And they tend to remain fairly quirky.
Also, regarding gfcf working for some kids: I believe it, but only because the discomfort from allergies or other wheat/dairy sensitivities exacerbate behaviors. Alleviate the discomfort, and the behaviors are reduced.ReplyDelete
Wow! I've gotten so used to woo-r-us over at Huff, it was a joy to read a thoughtful, deliberate essay on how to proceed after an autism diagnosis. With no woo!ReplyDelete
I would add that you can purchase ABA textbooks online inexpensively and download curriculum guidelines from master's programs in ABA so that you can work on providing ABA like therapy at home. Essentially what ABA is is very rigid operant conditioning. Pick up a developmental psychology text so that you know where and when children should be developmentally, some texts on ABA or behavioral therapy, and social skills stories and wade right in to supplement what the school district and your insurance provide.
just wanted to say, this is much needed and just great.ReplyDelete
Love, love, LOVE this post! :)ReplyDelete
I admire your courage for posting this, given how you have been treated by the cure-bies, elsewhere.ReplyDelete
I also admire your parenting chops.
I am a practitioner who works with children on the spectrum. I don't know if I have commented before, but I just wanted to thank you so much for sharing your family's story with us.ReplyDelete
I have been reading your blog since you were working with the DAN! protocol. I have to admit, I'm probably a bit too biased against the biomed approaches, but your blog has been invaluable in helping me to understand the approaches better, but also how to be more empathetic in my work with my patients and their families. I still tilt heavily toward the empirically supported side of the treatment world, and toward the neurodiversity perspective in diagnosis, but have also grown (I hope) in my ability to incorporate a "what your family needs/wants right now" approach-as long as we're all certain there is no risk to the child. I also have recommended your blog to a number of the parents I've worked with, and quite a few have found it really, really helpful.
Thank you so much for your openness with the community in sharing your journey with autism. You have taught me more than you'll ever know.
@bec My goodness. Thanks for making my day! Thank you, also, for being so respectful towards your patients.ReplyDelete
I respect your depth of knowledge, you've certainly made yourself an expert on the topic. But. I'm not loving the ABA approach. Maybe I'm just not loving it for my kid? I think it's scary, but I also think maybe that's just me.ReplyDelete
Anyway, just wondering if you have any thoughts along Stanley Greenspan's DIR/Floortime approach.
@BCC I'm not loving rigid ABA, and few parents/kids do. Leo's team works very hard to make the program as flexible and generalization-geared as possible, and tailored to Leo's interests, with the goal of gaining real skills rather than just gathering data. And absolutely no aversives.ReplyDelete
Leo loves the predictability of ABA, but it may be too rigid for other kids.
I suspect that any 1:1 engagement tailored to your unique child will have some success, as long as the therapist/parent has high-quality supervision and/or curriculum development/guidelines, and is genuinely attuned to the child.
As for RDI, one of my son's ABA therapists also worked in RDI. He always had positive comments about his program. Not my area of expertise, perhaps someone else can comment?
durr you wrote DIR not RDI. I *meant* DIR not RDI.ReplyDelete
'sokay. I read what you meant, not what you wrote.ReplyDelete
Great post, Squid. I'm also a vet of alternative treatments and I have a lot of regrets. I know why I did them, but I still feel like I exposed my kid to treatments that could have been damaging. I'm active in my school district and set up a website: ran into a lot of controversy when I didn't want to post links to Dan!-positive organizations, anti-vaccine groups, etc. One parent, who's a lawyer, wrote an extremely heavy-handed email suggesting I use his links and to write him back if I didn't intend to. I ended up taking down ALL the links b/c I refused to include things that I didn't think were scientifically valid. Parents are vulnerable enough.ReplyDelete
ABA wasn't the right choice for our family, it was too rigid. We use Greenspan's Floortime play based therapy for our boys 1 to 1 with great sucess.ReplyDelete
I was at the same point you were then i asked myself one question, what would I do for my child (only child) to be better? Now you and I may disagree on different solutions but what a lame assertion to say that GR is something other than hope? So sad that money is an issue for your child's well being. If this protocol has made my son's life a little better how do you put a dollar figure on that and at what level? This article was disturbing whichever side you fall on. I was the first to hold my nose to this approach growing up as the son of a doctor but on some level it works. Lazy people are just that.......lazy>ReplyDelete
Ah, the courage and merit of anonymous troll comments!ReplyDelete
Thank you for reinforcing stereotypes about GR fans as written above.