Dachel Media Update: Arthur Fleischmann Discusses The Future As Father of Daughter with Autism
Thank you to Anne Dachel for commenting on this story from US News: One Dad's Story: How Arthur Fleischmann Copes With His Daughter's Autism.
What's the hardest part about being Carly's dad?
What keeps me up at night is not knowing what the future holds. And maybe that's true for all our kids, but in most cases, you see a clearer trajectory for your child. In many ways, Carly is forging new paths for people with her condition. There are no real role models she can follow, or systems or processes or careers or financial plans laid out for somebody like her. If she was more disabled, it would be horrible, but there would be a course of life for her that would involve some sort of group home or something. If she were more able, she could live independently and make a living and support herself. But because she's this unique combination of bright, creative, driven, but severely challenged, I don't know what one month to the next will bring. . . .
What progress and change would you like to see?
What I find frustrating is that there are no comprehensive federal programs that support these individuals from childhood to adulthood. There's a spotty, patchwork series of support, but you need a lifetime plan and a lot of individualized planning.
With epidemics such as cancer and diabetes, there are fairly comprehensive programs and guidelines and support. This is battle by battle. At the same time you're trying to raise these kids - who are so exhausting and tiring - and you're so beaten down, you're also trying to battle with the government and local agencies to get the support you need. You're victim and advocate and front-line staff. You're caught in this quicksand, and it's brutal. If it were a one in a million instance, you could say, "OK, it's brutal, but fortunately it's just one in a million kids." But now the statistics suggest it's higher than some illnesses that get much more attention
Comments:
Arthur Fleischmann is worried about the future for his daughter. I've never met an autism parent who isn't. The simple reason for this is that no one can show us a comparable rate of autism in the adult population currently.
And please don't bring up that survey done in Britain by Dr. Terry Brugha that supposedly found a one percent rate among adults. These were people who answered survey questions showing they'd rather stay home and read a book than go to a party. This has nothing to do with how autism affects our children.
This simple fact is that when we talk about autism, we're talking about CHILDREN WITH AUTISM. The current rate of one in every 68 U.S. children, one in every 42 boys, is based on STUDIES OF EIGHT YEAR OLDS, not eighty year olds. Maybe when this generation of disabled children ages out of school and is dependent on the taxpayers for its support and care we'll get serious about addressing what's making our kids so sick.
Anne Dachel, Media editor: Age of Autism
This is what has happened to the autism rate in this country.
1980: 1 in 10,000
In 1994 the definition of autism was broaden and the numbers increased dramatically.
1995: 1 in 500
2001: 1 in 250
2004: 1 in 166
2007: 1 in 150
2009: 1 in 110
2012: 1 in 88
2014: 1 in 68
Each time the rate was updated health officials automatically announced that it was no real increase--just better diagnosing/a broader definition. The definition was changed 20 years ago. Why does the rate continue to increase?
No matter how bad the numbers get, no official can explain it and no one is ever worried. The media allows them to do this. No one is ever held accountable.
I recently finished writing the book, The Big Autism Cover-Up: How and Why the Media Is Lying to the American People, which will be released this fall from Skyhorse Publishing.
Anne Dachel, Media editor: Age of Autism
The new novel, The Autism War, by Louis Conte is the compelling story of what autism is doing to families and to American society. While the characters are fictional, the events and personal struggles presented in the book are being lived out everyday in this country. The disorder with no known cause, prevention, or cure is never a crisis to those in charge of health care, but to families living with the nightmare of autism, it overwhelms. Louis gives the reader autism as it is really is. It is our story.
Anne Dachel, Media editor: Age of Autism
I see the 40 year olds too- Martha.
I do.
That is because it all started in the 70s DO you hear me the 70s!
Barbara Fisher's kids were the 70 kids and she started the National vaccine information center and the first Congressional hearing was in the early 80s
1986 Congress passed the vaccine comepensation Act -- they came of with this bandaide after kids in the 70s were all effected.
In my community I see not just aspergers or PDD-NOS but bipolar -mental illness and from that springs drug abuse.
In my community it is like watching a big storm come your way before it hits full force. At first there was distance thunder and a fewlightening strikes -
Such as my older friend - had both of her kids on drugs and one died - the appliance repairment had one with PDD-NOS and the other son bipolar/ and drugs. The pharmacist's son on drugs, My chemistry teacher's grandson on drugs -- all in their 40s.
And then the storm got really bad -- there is more -
Posted by: Benedetta | April 18, 2014 at 01:44 PM
Here I am nearly 76 years old with a 40 year old son with autism, IDD, intermittent explosive disorder, paralyzed bowels due to institutional neglect and OCD. My son has severe communication issues. This tall, handsome red head looks so normal but he is like a child. He loves milk shakes and tantrums if he can't have one when he wants one. He is not cute like a child. I am a widow. Yes, I worry about what will happen when I am not around. My younger son is married and has given me two grandchildren but he functions like an Asperger; diagnosed with a nonverbal learning disability, however. Yes...I worry. But I think most of the adults are hidden. Many live at home. Many live in institutions. Many work at sheltered workshops or sleep in daycares. I see them all because I know they are around. Few people see them.
Posted by: Martha Moyer | April 18, 2014 at 01:44 AM
Arthur Fleischman offers some sobering assessments of the challenges faced by high functioning autistics such as his daughter. With the news of the latest surge in autism, we are reminded that a significant portion (2/3rd) of autistics have IQs in the average and above average range. The insinuation is that despite facing their 'quirky' challenges, these children will be fine and will be able to live successfully and be self-sustaining. Yet, here we have Carly who is a very intelligent young lady, not only capable of communicating her feelings and thoughts successfully, but also providing the world with incredible insights into autism via 'Carly's Cafe'. Yet, as Mr. Fleischman explained, he worries intensely about his daughter's future, fully realizing that her challenges are real, and she will be dependent on the system for life. Indeed, the notion of the 'quirky' autistic going about his/her life independently and successfully fits squarely in the column of being the extreme exception.
Posted by: Greg | April 17, 2014 at 07:38 AM