I always grew up believing the F-word was something we didn’t say. But it turns out that in the autism world, the R word is definitely the bad word.
Recovery.
It’s all raising its ugly head as I am releasing my book, which has a tag line of “A son’s recovery.” Whoa!
“How dare you insinuate your son doesn’t have autism anymore? Just because he’s functioning, doesn’t mean the autism isn’t there.”
“You can’t ever recover from autism. No matter how well you’re doing, you’re always autistic.”
These are just a few snippets from people who don’t know me or my son, or our story, but have literally judged the book by its cover.
After 10 years in the autism world, I still struggle with the great divide amongst us all. It’s bad enough to be constantly fighting in order to help your child in this world, but it’s even worse when the judgment comes from those who are in a similar situation.
It seems the two things I like to talk about most – food and recovery – are two very hot buttons for many other autism mothers. I am judged every time I open my mouth, if I dare suggest that maybe changing the food you feed your child could improve their health and behaviour.
But I’m not going to keep quiet anymore. If the mother I heard about dietary intervention from had been quiet, then I may never have discovered another way to help my son. I don’t care who I offend anymore when I speak my truth, because maybe someone will hear me and their child will benefit. Maybe even recover.
So let’s talk about the R word.
I’ve written before about the guilt of recovery (see http://nourishmehealth.com.au/guilt-autism-recovery/ ).
It’s so stinking unfair that some mothers do everything I’ve done, and more, and do not get the same outcomes as I did. I hate that, and it makes me feel sick when I write about what Tim’s achieving and I know they’re reading it with a sinking heart, wondering if all their efforts are in vain. My NOT talking about what’s possible won’t change that though. And if I had a magic wand, I would wave it across all of them in a heartbeat.
I use the word recovery quite deliberately in the context of its definition: return to health, return to normal state, gaining back of something lost. I have not ever said Tim has been “cured.” I don’t believe in an autism cure. Recovery is a long hard road. It can cost you everything – your family, your money, your friends and your sanity. And for every child, recovery will look different. At the end of the day I truly believe that we walk that long, lonely road with the hope that, at the end of it all, we will have a child who is healthy, happy and reaching their potential — whatever that is for them.
Though I still feel guilty, I consider it my responsibility to talk about recovery so that others know what’s possible. It mightn’t be around the corner – it took me almost 10 years – but it’s real and achievable, and we need to be shouting it from the rooftops.
So what does recovery look like for me?
It looks like this:
A 12 year old boy who started a new high school this year, not knowing anybody, who has made new friends, plays in the school band, is fully mainstreamed and who is functioning typically amongst his peers.- A boy who has to work damn hard at everything he does.
- A boy with a fabulously quirky outlook on life and a wicked sense of humour.
- A boy who is always going to be a little left of centre.
- A family who can travel and go out together, like normal families do.
- A mother who is finally exhaling.
And if that’s not Recovery, I’ll take it anyway.
~ The Eagle
The Eagle makes her home on the Gold Coast, Australia where she lives with her husband, teenage daughter and son who was diagnosed with autism 10 years ago. When she’s not working with other autism families to help them implement dietary and lifestyle transformations, which changed her son’s life, you’ll find her playing tennis, reading autism books, studying nutrition and drinking red wine. Her favourite pastime though is watching her amazing boy spread his wings and soar to new heights.
Thanks for publishing this great article. I’m a long time reader but I’ve never been compelled to leave a comment.
I’ve bookmarked your website and shared this on my Twitter.
Many thanks again for a quality post!
I love the message of this article. My son is 6 now, and intergrated into 2nd grade without an aid. We still have a few lingering neurological issues but my son’s recovery has given a meaning to my life that I never thought possible. Here is is story
http://thedamageundone.com/2015/10/16/healing-my-sons-autism-with-gaps-diet-video/
I did recover from autism and I’m a normal person with a bit of maniac, a lot of creativity and a spark of genius. My 7 year-old boy is almost full recover from Autism, and we’re still struggling with my 3 year-old boy who is deeper in the spectrum, but is doing progress.
My son is certainly not recovered – but I love to hear recovery stories! Don’t be bashful – your son’s story is very important, and inspiring. I hope that someday mainstream medicine will learn a lot from these stories.
There clearly is a lot to still be learnt about autism. Possibly there are sub groups where some kids have autism symptoms caused by the gut. IDK. But thank God there is recovery for some. It must be talked about. It must be shared. Keep on with the good work!
Thanks. I too am beginning to exhale after a little more than 6 years of very hard fighting. I hope this gives hope to all those still fighting so hard for health for their children.
Thank you for writing this, I can relate to every word! This month marks the decade anniversary of our start of recovery (and our descent into the spectrum). Our recovery looks very similar, but at 15 it is even better! So thankful and so prayerful others will continue to experience Recovery and that we can learn more and more how to stop and reverse the loss.
With Warm Regards, Julie Stewart
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I can’t tell u how much I relate to this post! I was just thinking about this yesterday in fact. I came across an old email from about 2 yrs ago that I wrote to my son’s very first speech therapist (in 2007). We stayed in touch thru FB bc we had friends in common. I told her my son was on his way to recovery and doing amazing. I shared that he was “talking non stop now” and I thanked her for giving him his start. Her reply was nice and she was sincerely proud and happy for him. But she credited it all to me being a dedicated advocate for him. “I always knew he would reach his potential bc of u. U made sure he got everything he needed and were the catalyst behind his success.” Um, no. How could u know he would def reach his potential when I didn’t even know. Sure I was his advocate but so is all the other ASD parents. See that gets me mad bc it implies the parents whose kids don’t recover don’t advocate for them enough. Yeah I made sure he got everything he needed- diet changes, methylation support, detoxification, etc… LOL ugh… She was very aware of us taking a biomedical approach. Would it kill her to say, “U know it was a good thing u focused on his health and implemented all those lifestyle changes when u did. Clearly it has something to do with his outcome!” Even when the professionals and experts at his MDT mtg all agreed that based on his recent evaluations, he no longer met the criteria for ASD, they STILL STILL couldn’t acknowledge the biomed aspect of treatment played a part. They had the nerve to say things like, “Oh I knew a long time ago this would happen!” and “U know I always felt like ASD didn’t quite suit him.” WHAT?!?! Are u freaking kidding me? Do they think these lines comfort me?! BC they piss me off!! They are basically discounting all the dedication, effort and energy spent working toward recovery. What hurts more than not acknowledging my role in it all, they don’t even realize how much my son has been thru- how hard HE had to work to climb the mountains that he did.
AMEN!! Thank you for this!
I started to write a comment on this article, but it turned into a blog piece. So here: http://adventuresinautism.blogspot.com/2014/10/please-stop-redefining-autism-to-suit.html
Great post! We too have been at this a long time… 6.5 years to be exact. We are SO very close to managed recovery ( that’s what I call it too!). He is mainstreamed, no aide, has friends, plays sports, etc. I just cannot make the stimming stop! Any suggestion? His stimming usually involves jumping up and down and making weird arm movements. It used to be full- fledged flapping and rocking, now it’s more of a scooping motion on his stomach. Luckily, he has not been bullied for this behavior yet, but I fear I’m losing time on that one. He’s in 2nd grade now and for the most part kids are still pretty forgiving. I’m not sure how much longer that will last. Thanks SO MUCH!
Thank you for this….yes recovery is possible
Sadly, though I haven’t dealt with autism, I have seen this same attitude when it comes to someone sharing about how they’ve recovered from fibromyalgia, a panic disorder, and a host of other things doctors want us all to believe are irrecoverable, “maintenance for life” issues. The reality is, people should celebrate recoveries from such things, even if what works for that individual don’t work for them. It’s another key to helping others recover, even if it doesn’t work for every patient.
Health is such a complex creature – when restoring health that’s been destroyed, it’s no simple matter. I’ve tried many things over the years that worked for others for fibro, with no or very limited success in the outcome. I never questioned that those things worked for those others. Early this year, I read another testimonial on a blog about what helped a woman break free of fibro. THAT turned out to be the key for me finding freedom from it. You never know what one thing, or what chain of things, will help a damaged body heal.
Keep up the fight, and don’t stay silent!
Those of you who are living with this or anything else that’s considered irrecoverable, keep seeking answers. What works for one person may not work for you, but that doesn’t mean it doesn’t work for others. Keep seeking what will work for you and yours.
I believe that whatever we believe for our children is what their outcome will be. If you believe in recovery, your child will recover. If you don’t, then they won’t. Recovery is possible, but the journey will be different for each child. Our journey did indeed include food, but in the end was not the “magic pill” that put her over the edge into recovery. For our daughter it was a desperate act of faith and belief on my part and a pastor who believed with me. I asked my pastor if he believed that God could heal her of her autism. He said “yes!”, laid his hands on her, prayed, and she has never been the same since. She is indeed recovered! We can now do all the things that NT families can do without any special planning to avoid triggers. Infact, there are no more triggers! Just normal preteen “stuff”. I to can breath now and it feels amazing. Please, if you are reading this and you are still on your journey with your child, please don’t give up your hope for your child. Please hold on to your dreams for them. Please hold on to recovery (if that is truly what you seek). It may come by way of food, prayer, jumping up and down 100 times on your left foot, or a combination of a 1000 other things, but recovery IS POSSIBLE! Oh, and when you and your child recover… don’t ever say “cured”.( I’m still trying to find my head after it was bit off.)
Loved your post…thank you for sharing your son’s story and your life’s journey with all of us. We too were at the point where we were able to call our son “recovered” after being treated bio medically for 5yrs. Now however our son has regressed once again since being diagnosed with P.A.N.S. Still we hold on and will never give on the HOPE that he will once again RECOVER to where he was and more. God bless.
“FAITH is being sure of what we hope for and CERTAIN of what we do not see”
Have his *lyme titers* tested through a reputable lab (not Labcorps or Quest), if you haven’t already!
Ditto with a capital D. To everything you said.
My son is now 13, 8th grade honor student, just made first chair for Viola, runs on the treadmill daily, likes to cook, does all the yard work, is absolutely hilarious, has no health issues or allergies, and eats a normal diet. Yes, I *know* how incredibly lucky we are. I’ve stopped saying blessed because that implied we had some corner on the market of miracles or others are not.
I was shocked the other day when my Aunt commented “still thinking he never had autism, because if you could cure it, there wouldn’t be any more cases.” Of course, she wasn’t there for the four years we didn’t visit because of — well you all know why. How quickly they forget the headbanging, toe walking, licking, head twisting, and raging tantrums. Or the gluten/casein/soy/corn free diet we did for almost 5 years. I will never forget which is why I continue to share our truth.
Eagle & Others, I am one of those for whom recovery has been elusive. My 6yo boy with autism has been a tough nut, despite many integrative, holistic interventions as well as an intense focus on diet. Don’t worry about me when you SHOUT about recovery. Your success give me hope. Your efforts provide education for those who need a different perspective. Your gain is NOT my loss. So keep shouting. Keep CELEBRATING. You deserve to revel in every single normal thing your child does. No guilt. And if you feel a twinge of it, than shout louder. If you save one life, just one, from a lifetime of physical pain, disability, brain fog, seizures, etc… It will be worth it. And even though our journey has been LONG and will continue on even longer, I shout with you. KUDOS.
Congratulations on all that your family has achieved!
I know that it’s hard, but try not to feel survivor’s guilt.
I’m going to be horribly narcissistic and quote myself, but I think that it’s applicable –
“Guilt is such a useless emotion. It induces stress and anxiety for no good reason. Guilt feels horrible. It feels like a kick to the gut; a twist in the heart and the soul.
A particularly useless form of guilt is survivor’s guilt. On top of being useless and destructive, it’s narcissistic. I feel better but you still feel lousy and that makes me feel bad – as if I have any control over how you feel. Yuck. Seriously, it’s disgustingly narcissistic. It is ridiculous and I know it.
Yet I feel it. I have been having horrible survivor’s guilt lately. My stomach has been in knots over the fact that people are suffering. It hurts me to hear stories of pain and hardship, and it especially hurts me to hear stories of injustice. Everyone who has been hurt by the pharmaceutical industry, who is suffering because of a stupid drug, is suffering not only physically, but also from a grave injustice.” From http://floxiehope.com/ – not an autism site btw.
It seems like there should be a separation between the medical aspects of autism and the personality aspects. Is that an insulting thing to say? Of course, they’re connected – everything is connected. But when people talk about recovery, they’re not talking about “fixing” their quirky kid – they’re talking about recovery from the physical and mental hardship that come with autism… right?
Congrats again!
Lisa
AMEN!! I have been blessed with the same. Managed recovery I call it. Yes, he has to pay attention to diet and rest. Has to take his supplements daily. But in every other respect he is NORMAL. Mainsteam education and succeeding. Plays high school sports. Gets invited to events. Has friends. Also quirky, but aren’t we all just a little bit??
RECOVERY. Best word ever.
Cheers! Just published my book too – which includes some of the highlights of my son’s Recovery too – along with my Recovery of chronic conditions (which is a common theme for the moms of diagnosed kids). My son, now 10, gets straight A’s in a mainstream classroom (could barely read or write just a few years prior). He has friend; plays sports; engages in conversation (was mute most of his childhood), and most of all – thrives every day! He, too, is quirky and has the best sense of humor. I, too, can finally exhale.
Recovery IS possible. And, we are obligated to talk about it.