Every parent of a child with autism (or any other life-altering condition) has a diagnosis story. You would think with 1 in 36 children being diagnosed with autism in this country, that diagnosis delivery would be done with support, factual, current information, empathy and understanding.
Sadly, it’s not. There was a recent thread on a facebook group where a mom had asked others what they were told at the time of their child’s diagnosis. Overwhelming, the response was that they were most often told there was nothing they could do, that their child would live in an institutional setting and that things like diet weren’t worth trying. My own story pretty much echoes all of that but my story happened 10 years ago. I was floored that in the last 10 years, nothing had changed. Except the fact that there is an epidemic of children experiencing neurodevelopmental disabilities in this country in 2018. 1 in 6 children has a learning disability. Boys still experience autism at about 4 times the rate of girls. At this trajectory, there will be no men left in this country to work, to serve in the armed forces, to become fathers themselves.
I think the words of the mothers speak for themselves. Included here are the Diagnosis Stories of your neighbors, your daughters, your sisters, your friends. As parents, we manage to find our way through the grace of God, through hard work, through the help of our own community. It’s the most traumatic moment of my life to hear the words ‘He has autism’ and then to have a professional tell me that there was no hope for his future (and we’re talking about a 4 year old here).
These stories are shared with permission. I am grateful to be part of a community that isn’t broken, but rather broken open and works towards HEALING.
- I was told there was nothing I could do and my son (with chronic diarrhea and yeast infections- not medical at all) would have to live in a “home” one day. Year 2002. ~ A.A.
- We were told there was nothing we could do. He was 2 years old. We were told he would not be able to play soccer because crossing the midline would never happen and also his coordination was off. His brain couldn’t tell his legs what to do properly apparently. Fast forward one year after I started GFCF and the neuro developmental pediatrician who told us all that said there was no evidence that GFCF worked. Fast forward another year after that and she said we should check out the GFCF diet because it seemed to be working for some of her patients. By age 7, my son was playing travel baseball. Soccer was never his thing. LOL. He still has issues, but this was my first eye opening experience into how the medical community knows NOTHING. It was the start of our holistic journey. ~ C.G.
- Mine told me “if I worked really hard that I could undo the damage.” I know I was fortunate to have a doctor encourage us to start healing. ~ M.V.
- Ours told us that 20 hours of ABA was the only evidence based treatment (insert major eye roll here). If only that vile woman could see my daughter now after never receiving ABA but plenty of other “non evidence based” treatments:) ~ L.C.
- Little Man was diagnosed at an actual “Autism Center” that is supposed to be nationally renown. I was told he would more than likely never speak again, never really connect and that accepting that was the best thing I could do for him and our family. That it was genetic and there was no real treatment except ABA and then I was given a stern lecture about all that nonsense out there when she noticed I had written down he was on a probiotic. There are other fun details like when I went up against the Director of the Center one on one over about $10,000 of therapy (William was in their esteemed early intervention program that was about $500 a day) and he had Paul Offit’s book on his desk. He was trying to bait me. I got all the money back without a lawyer. ~ C.W.
- The neurologist our pediatrician sent us to when d regressed at 3 said “we are seeing this late regression and don’t know why.” He then slipped me a piece of paper in which “autistic regression syndrome” was written down. He didn’t even have the balls to say the words. We left with zero resources. The pediatrician, upon hearing this told us “the only thing you can do is ABA therapy and you can’t afford it so you might as well Give up”. And “the only thing gluten free diets might help is celiac”. I fired him on the spot. ~J.W.
- The Neurologist told me that early intervention would help and gave me a prescription for B6 because he read recently in an article it could help autism. He didn’t seem really hopeful, though. This was in 2000. ~ M.D.
- The doctor literally told us to go to the Autism speaks website and read the first 100 days, and not to research too much and wear myself out!! Oh and told us to read Temple Grandin’s book and he would see us in 3 months, that was 2 years ago, never been back! ~ L.P.
- I was told that I was wasting their time by being there. She walked in, measured my son’s head, and told me that he had obvious autistic facial characteristics and that I needed to stop by to schedule a psychiatric appt on my way out. **she later called me and apologized. My son’s MRIs weren’t normal and she learned a big lesson. ~ H.S.
- They told us to find an institution for our severely affected son before he hit puberty. Today he still struggles with PANDAS, but he has recovered from his autism, is mainstream in school and has a pretty typical life. It’s not perfect, but let’s just say that his two younger siblings who aren’t affected by autism give me more issues than he does these days. There is always hope. ~ T.D.
- The neurologist we saw was a joke! Came in with a backpack on (like he was on his way to lunch) checked my sons knee reflex, made him throw a balled up piece of paper and then says “yep diagnosis seems correct” ~ V.G.
- We were told to accept that he would live with us until we couldn’t handle him anymore, probably by 14 since he has “big genes” and then a group home. He’s 19 and healed, in college playing football. NT (neurotypical). ~ S.S.
- When my son was three years old a team of child psychologists, a speech pathologist, and an OT told us that George would never be in a mainstream classroom, he would never have friends, never go to college, and never fall in love. Can you imagine saying that kind of thing to a parent? They were wrong!! They were so so wrong. He has been in a mainstream class without supports for 5 years now, has several beloved friends, makes straight A’s, and has the kindest, most beautiful heart I’ve ever been lucky enough to know. They were so wrong. ~ G.O.
- I was given a book that said no hope, no cure, just adult living facility. I’m sure there are wonderful adult living programs, but at the time he was 140+ ATEC, and it was scary (now 21 ATEC at age 13). ~ M.P.
There were many, many more. And every day at least 120 new families receive an autism diagnosis. And every day 120 families must endure the opinion of a doctor that there is nothing they can do to help their child except put them in behavioral therapy for 30 hours a week and then find them a home when they get older.
Please know that there is SO MUCH that you can do to improve the health and expression of life for your child. These folks who diagnose autism do not treat autism. They are trained to look for certain behaviors at certain levels of intensity and then label that with a diagnosis. They don’t read about treatments, they don’t follow people they’ve diagnosed, they DON’T KNOW.
If you have a child with a neurodevelopmental diagnosis, please know that there is hope and promise for your child’s future. Never give up, never stop questioning and keep learning. ~ Amy Y.