By Anne Dachel
Like most autism parents, I have vivid memories of when my husband and I were informed about our son’s autism. The first official diagnosis came when he was seven in the second grade. That was in 1993, back before all the better diagnosing so the school district had to get a psychologist from a hundred miles away in Minneapolis to come to Chippewa Falls WI to declare John, autistic. She merely observed him at school for an hour or so. It wasn’t really tough.
(Actually, a year earlier, my mother had read a story in a magazine that described autism and she brought it to me and said, “That’s John.”)
What I remember most clearly were the psychologist’s words after she told us John had autism. She said, “I don’t know if he’ll ever be able to hold down a job or live independently.” And that was it. No advice on what we needed to do to help John succeed in school---nothing. I also remember that she told us that autism was so rare, that no one really knows what to expect or to do. She added that there probably weren’t other autistic children in our small town.
And I cried all the way home.
After struggling with John through third grade, I quit teaching and homeschooled him. It worked out great. I had to design my own curriculum to work with his special needs. We had a lot of fun each day and he did very well. We joined a homeschool social group and that was great too.
Then when he was 15, in 2001, another doctor re-diagnosed him as having Asperger’s. That was the latest autism discovery and I remember the doctor being very excited about telling me. Again, despite all the great strides they were making in autism, he had nothing else to add. When I asked about autism, all he could tell me was that it was the fault of the bad genes from Richard and me. His parting words were, “If we could just get these kids through junior high hell, they might have a chance at a life.” (And he was the best autism doctor, we were told, in Eau Claire at the time.)
My son is high functioning. He does so many things independently and he’s made incredible progress since he was seven, but I remember
how isolated, confused, and helpless I felt when the experts labeled my son and gave me no hope. There was no one I could turn to for help.
I can only imagine how much worse it is for a parent of a child with more severe autism. I’ve read countless stories where parents sound like they’re in total despair. There have been a number news reports over the years where the helplessness leads to suicide and even murder.
So many in the medical community stand by so disinterested and offer nothing. Parents everywhere have gotten the message: you’re on your own--till now. MEET THE AUTISM TEAM.
Saturday, November 17, 2012, Age of Autism posted the video, Autism Team, Changing Lives.
If you want to see what can be done, view this. Share the stories of help, services, and therapy. This video has a lot of information about children both here and in the UK. It opens with photos of a 14 year old autistic boy, Jonathan Edwards, who is emaciated and obviously suffering from severe abdominal pain. Jon is non-verbal and in diapers. His mother, Allison, tells us that she gets no help from doctors. His father, Michael, reports that they can’t even get simple tests done on their son.
Next we hear that the Autism Team has Jon in the United States and he’s being seen by Dr. Arthur Krigsman. Krigsman is heard saying, “He has the autism associated entercolitis. That’s exactly what he got. Over all this is good news, not bad news. It’s all treatable….A lot of parents say that they feel vindicated. That they weren’t crazy. You’re not crazy.”
Next, in a very moving scene, Jon’s mother, Allison Edwards touches her peacefully sleeping son and asks, “Is this the first moment in his entire life when he hasn’t felt any pain?”
Fast forward to a scene of Jon Edwards as a greatly improved young man. He’s smiling and his father is heard saying, “The change in Jon has been absolutely dramatic physically and there have been consequential mental changes in him as well. To look at him, he is a different child. He has the physique of a normal 14 year old child. Within three weeks of being back from New York, he was completely out of [diapers]….We are absolutely convinced that his quality of life has improved immeasurably.”
Then we’re shown the members of the Autism Team which included a clinical psychologist and a nutritional consultant, along with Dr. Krigsman.
Michael Edwards: “If you have a parental instinct that something seriously is wrong, you must go further.
The question appears on the screen, “Do you know someone who needs our help?”
Then there’s a photo of a boy with a horribly swollen eye named Jack. “There are countless others like him.”
This is what The Autism Team is all about---improving the lives of these children and letting the world know how it’s done.
The task is incalculable. I can imagine that there are countless thousands of children in desperate situations right here in the U.S.
The three minute video Changing Lives shows us the side of autism that never appears in news stories.
This is as bad as it gets, so if the Autism Team can help Jonathan Edwards, imagine what they’ll be able to do for other children. Their message needs to be everywhere on the Internet. We need to share this. What was done for Jon can be done for others. These children deserve nothing less. There is help. Lives can improve. The time is now.
WE NEED THE AUTISM TEAM-CHANGING LIVES ON U.S. TV
I asked Polly Tommey why viewing the video is so important. Here is her response:
“Help one child to help a million others. Open the world of autism up to those who don’t know. The TV networks in the U.S. need numbers and we have to prove that autism is an issue that people are interested in so they’ll be willing to broadcast this series.”
YOU CAN HELP!
“Please watch the trailer, Changing Lives, and send the link to everyone you know. Ask them to watch and share this video. –The number of hits on this video matters. By doing this, you will be helping a great many families that urgently need support.”
For more details on Jonathan Edwards, I went to Allison, his mother. This is her son’s story.
Jon was diagnosed with autism on his second
birthday, corroborated 3 months later following a full assessment and I was left, from then on to search out and fight for the services he
State provision at the age of two barely changed as he grew but mainly centred around
his learning difficulties and how to get Jon to respond.
He needed his diapers changed up to eight times a day, occasionally whilst distracted dealing
with the rest of the family's needs, to my horror he managed to eat his pads and contents. I had to battle the great bureaucratic machine's providers, the passionate seeking compassion for Jon,
it was ridiculous, as if no-one cared. I became quite a campaignerdespite being accused of being 'lazy', to get him out of pads, his autism was blamed for most things, I was blamed for the rest... (Read the rest of the story HERE.)
I asked Polly Tommey, shown on the video, about how the Autism Team got started. This is her answer.,
Fourteen years ago we agreed, as a family, to talk about our son Billy, who atthe time had a recent diagnosis of severe autism with severe speech delay andbehavioral issues, on a well known news programme. For us as his parents, there was little help or knowledge about hiscondition so we felt we had nothing to lose. Billy was totally lost in hisown world, the boy we once knew had gone. Billy was sick. He suffered fromdiarrhoea, his hair was falling out, he had frequent bouts of projectilevomiting, a big bloated tummy, he thrashed his head against the floor andwalls 24/7 and had no idea we were his parents - the list goes on. We wereat our wits end and desperate.
It was after the programme aired that I realised the sheer extent of theproblem and actually how many of us parents were out there. We were inundated with emails and letters from desperate parents with very sickchildren.
Soon after Billy’s diagnosis and knowing nothing about autism or how tohelp,our son, Jon (my husband) threw himself into research and booked animmediate flight to the USA for a Defeat Autism Now (DAN)conference. I pur all the letters I had received into a then, simple newsletter and called
it, The Autism File and hoped for the best - that somehow between us all we
could work out how to help our children.
The Autism File is now out of my garden shed and properly managed by
Belvoir Publications and I continue to be the Editor In Chief. It's run by a
fabulous team and still strives to educate and support families around the
With the success of the magazine came campaigns, television and press
around autism and associated disorders. With every press interview I did, every
meeting at Downing Street, every issue of Autism File, there came the same
ongoing problem - I was getting inundated with phone calls and emails from
broken parents simply unable to get help from their doctors or school
I was being told about teenagers in prison, children so
sick they couldn't eat or swallow, bowel issues beyond belief, drugs for
conditions the children didn't even have, parents that had taken their
lives and that of their children, again, the list is endless.
We were told Billy would never speak or live with much purpose but I knew
from all the work my husband (who re trained as a Clinical Nutritionist)
and many DAN doctors at the time put into Billy that so much can be done to
improve the quality of life for people with autism. This is when we formed
The Autism Team and decided to get video footage of children and teenagers
before and after help was given to them. The results so far have been
outstanding. In just 3 months, we have turned the lives around for 4
families. They now still live with autism but with children and teenagers
that laugh, engage, are toilet trained and for some there is speech. It's
not rocket science, it's not hocus pocus, it's just getting the right
experts who understand autism and are experienced qualified professionals.
We aim to help many more families and get our footage onto a network, then
we can help many more. This is not my work. This is team work--we work as
a major team to pull together the right input for each family.
I am fortunate to now have a strapping healthy, 16 year old son who now talks, texts and
yes, has a massive purpose in life.
The Autism Team is coming to help.
What is truly wonderful about The Autism Team is the fact that THEY KNOW WHAT PARENTS NEED. THEY’VE BEEN THERE THEMSELVES.
They have answers. The public needs to see this. The message is clear—we can help children with autism. Their lives can be better. It’s time to stop the suffering.