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Dear President: No More Services for Autism Please. Let's Give Power and Education to Parents.

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No Matter who wins the election I hope it doesn't lead to more government supported educational services for autistic children.
 
However, I do hope it leads to more services for their parents. And I don't mean ridiculous respite that eases the burden for a few hours but returns the child in a worse state than they were when they left. Fact is handing your trust over to caregivers can be a dangerous abdication of responsibility that all to often leads to injury   or death   Not only does abdicating put the child at risk, it puts the  adult  at risk. And if that isn't bad enough it puts the  parents  at risk by leaving them unaware of how to cope with their attacking child.
 
When I say "I hope it leads to more services for parents' I mean actual help aka instructions on what to do and how to do it. And ok, yes please, some more research into causes and  cures . (That seems obvious, but the rest may be new thoughts so let me explain.)
 
It is the parent who is there when the child first shows signs of autism. If the parents voice were respected as an informed one, the clinicians would hear them sooner and in fact the need to be heard would often fall away as knowing what to do led to healing and growth instead of illness and regression. And even if the child is particularly challenged, optimum care  is early intervention and this is they way to intervene at the earliest juncture. Besides, the parent is the advocate for the child for life. No one has a more valuable job in this group. Parents can speak for the nonspeaking child, but only if we listen and then share our knowledge. Unfortunately, it often follows that when an autistic child reaches puberty the degree of behavior that ensues leaves parents baffled while schools suspend the students.  Had the child NOT been intensively made to comply for so many school hours a day and then shuttled back home to be dealt with when the teachers are at a loss, but rather embraced and encouraged to learn with lots of praise and sensory de-sensitization, most of these kids would not fall apart.  And if they did -- the family would be able to help. If parents are our focus, giving up would seldom be the case.
 
So what am I suggesting, and why do I think I know anything on the subject?
 
I am originally a Canadian. I raised my children until their teens and preteens in the Canadian school system. As you likely know Canada has a somewhat  socialist  approach and most things -- like banks and education -- are government run leading to a citizenship with entitlement issues and a great disdain for privatization of any kind (like banks and education). My children had lots of support and were programmed for on a regular basis. I had 4 hours per special needs child of respite a week, and nothing more. I do not approve of social systems. They strip people of their motivators and create sheep who baaa as they march to slaughter.
 
My children did not learn from this set up and neither did I. However, according to the constantly acquired data of the behaviorists they were doing as well as was expected. The problem was the expectations. If you lower the bar of expectations far enough  any  teaching modality can be deem worthy. And any unexpected success story at risk of spreading a contagion called false hope. According to all I have witnessed in my 55 years: this is the main approach of mainstream education, medicine and social services. Keeping me as a parent in the dark was so important to some systems that I actually had one special education administrator tell me that he couldn't share his techniques with me because then I would use them at home!!!????
 
That approach led to many scary moments as the teachers, doctors and behaviorists insisted I try certain psychotropic meds on my sons--one time my son developed parkinsonian tremors and a full body loss of control over his gross motor system. Putting  behaviorists and mainstream medicine in bed together has this risk. Since I had no authority as a parent, I was always at risk because when trained personnel couldn't get my children to behave, but I could, they said I must be abusing them at home and that's why they listen to me so well.
 
Three of my four ASD children are now independent and socially successful (meaning they pay their bills and their taxes and have created their own social networks of support).  They achieved this level of skill because I searched for answers and took them OUT of school (at that point we had already moved to Texas where they weren't any wiser were willing to let me do it myself). My special needs children reached such a high level of skill because of the skills I acquired and now  share with other parents internationally .  I acquired these skills by learning from others who also acquired their skills by bucking the tide of government controlled teaching.  Teachers    can be    dangerous   They can also be  wonderful,  but how do we know which one is which?
 
Fact is I was valueless to my children's education until I stopped giving away my power to the ideologies of the educators and chose to know instead of to follow.
 
I do not want more ineffective programs for autistic children. I want effective ones for their moms and dads. I want help that doesn't side with pharmaceutical companies and encourages free information sharing on all approaches alternative and otherwise. Trusting science as if it is infallible is like having historical amnesia and wiping the books of stories on tobacco being good for the lungs, mercury for the teeth, cocaine for clarity, dirty hands for midwives,  thalidomide for morning sickness  and  vaccines for polio  . As we well know, when science makes these mistakes it's the patient and their families that suffer. In my opinion parents are our window of opportunity to change things because parents are there when the need arises, they are our first responders!
 
Think about it. Moms and Dads are like the sun: a free resource we should now begin to harness. True, Moms and dads sometimes fall apart just as teachers and nannies do, but that is usually because of the powerless position we have put them in socially, and because they don't know what to do: All the more reason to give them government support.
 
There was one wonderful aspect to parenting in Canada that I would love to see brought back: When I was a young mom and gave birth to my daughters in both cases a visiting nurse followed up to see how I was doing. She had no designs on "catching' me at being a bad mom and was not there to prove me unfit or fabricate and judge. She came to "inform' and help on any subject I may or may not know I needed help with. She visited mothers regularly till they didn't need her anymore. She was generally a mother herself and lovely to chat with.
 
Autistic babies are usually riddled with sensory issues, so this is the time for intervention: moment one. There are great doctors and nurses working with this part of the disorder in newborns who could help you change the story so that no diagnosis is ever given. Best of all these approaches sidestep the need to force compliance and heal the child in its infancy by easing discomfort. A visiting nurse could also create a proper file so that should there be a regression she can attest to its time, "yes vaccine no vaccine'--"yes bug spray no bug spray' etc, and this data would help researchers.
 
And with this kind of data we can really uncover clues and no one will say "ya but that is just the parents words'.  At present the parent isn't very well respected. I know because I argue with other "professionals" about it at conferences. But with this kind of support we could change the story enough so as to drop many future diagnosis " possible with this kind of support we will be scratching our heads and saying "Weird but now the numbers of autistic kids is going down???"
 
Fact is it just doesn't make sense in this information age to try and keep the learning in the hands of the teachers in the schools, especially given the accepted belief that early intervention is the key. After all -- informed or not - parents are the early interveners. So let's inform them. It is the parent who will be dealing with this reality year after year while school after school and teacher after teacher fall to the wayside. Parents are the great unexplored terrain and all they need is knowledge. So let's fund the parents. Let's support them as they reach for alternative therapies, not just back the one with the most data driven approach.
 
In my experience (I am often called into homes to help when the child has become violent) ABA teaches the child to perform skills in order to get the teacher to back off and give them a break. This approach reinforces to the child that what they like to do is "weird' and unacceptable. This then often teaches the child to resent authority figures and their own unusual selves. Hence, as hormones kick in and size is no longer a disadvantage, big guys strike out. Autistic kids like people. They just don't like people that don't like them. ABA has a tendency to treat children as if their natural desires are unlikable thus it can increase the challenge of enjoying others and creates the idea that autistic folks don't bond or connect, when in fact it is the  modality itself  causing this tendency to become a reality.
 
Many ASD individuals become violent, but autistics aren't violent for no reason. It's either sensory system malfunction or environmentally created.
 
Train the parents while the babies are young. Years ago that is how it was done. The visiting nurse, the house calling doctor, they came to your house and showed you what to do.
 
A fully informed parent can become a gifted administrator and clinician all rolled into one.
 
 

 

Lynette Louise aka THE BRAIN BROAD is doubly board certified in Neurofeedback and has an MS. She is studying for her PhD in Clinical Psychology with a specialty in Psychophysiology at Saybrook University Global mental health expert Lynette (more...)
 

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I make a few controversial statements in this arti... by Lynette Louise aka The Brain Broad on Sunday, Nov 4, 2012 at 1:12:07 AM
Remember when my boys were little, and the younger... by Tsara Shelton on Sunday, Nov 4, 2012 at 9:55:19 AM
Thank you for being my witness, my right hand and ... by Lynette Louise aka The Brain Broad on Wednesday, Nov 7, 2012 at 1:52:49 PM
Tsara Shelton's shared link of her Autism expert m... by Jennifer St Jude on Sunday, Nov 4, 2012 at 1:11:51 PM
Thank you for your voice.... by Lynette Louise aka The Brain Broad on Monday, Nov 5, 2012 at 2:22:48 PM
Before I even get to the author's false informatio... by Pasha Bahsoun on Monday, Nov 5, 2012 at 12:37:04 AM
And I think calling her insensitive for using a wo... by Tsara Shelton on Monday, Nov 5, 2012 at 1:04:33 PM
What exactly does "The author herself was an 'auti... by Pasha Bahsoun on Monday, Nov 5, 2012 at 1:38:21 PM
I apologize if my comment was slightly unclear and... by Tsara Shelton on Monday, Nov 5, 2012 at 2:39:05 PM
Thank you for your voice.... by Lynette Louise aka The Brain Broad on Monday, Nov 5, 2012 at 2:21:51 PM
I am a parent of a child with autism as well as be... by Benison O'Reilly on Monday, Nov 5, 2012 at 3:04:13 AM
I think the authors point is more that parents are... by Tsara Shelton on Monday, Nov 5, 2012 at 11:58:25 AM
Tsara ... as always ... thank you for your voice!... by Lynette Louise aka The Brain Broad on Monday, Nov 5, 2012 at 2:25:36 PM
Thank you for your voice.... by Lynette Louise aka The Brain Broad on Wednesday, Nov 7, 2012 at 1:53:42 PM
How nice it would be if, in a two-parent family, b... by Gloria Grening Wolk on Thursday, Nov 8, 2012 at 2:10:18 PM