Autism / Autism Spectrum Support Group
Autism is classified as a neurodevelopmental disorder which manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior. Although the specific etiology of autism is unknown, many researchers suspect that autism results from genetically mediated vulnerabilities to environmental triggers.
Autism Blog
From Lisa Jo Rudy,
Should Autism Parents Have to Become Therapists? What's Your Opinion?
Parents of children with physical illnesses rely on medical doctors (the experts) to diagnose, prescribe and treat their children. Parents of children with mental illnesses, for the most part, rely on psychiatrists, psychologists, neurologists and similarly credentialed professionals to sort out their children's physical and psychological needs and treat them.
Parents of children with autism may not diagnose their children. But once that diagnosis is complete, it's up to parents to research the treatment options and select those they personally feel are most appropriate. Once they've made the selection, it's not unusual for parents to actually administer the treatments.
That's tough enough when parents choose to put their children on special diets or supplements. It can becoming overwhelming when the treatment of choice is hours-a-day interventions such as SonRise, Floortime or RDI (Relationship Development Intervention). Some parents even go so far as to get training in and provide their own child with Applied Behavior Analysis.
As it happens, I chose to use Floortime therapy with my son. Like many parents, I read the books... attended the conferences... watched the videos... and did my own thing. I worked with my child for hours a day, twenty minutes at a time, entirely on my own. I saw results - and so I kept at it. Had I chosen to, I could have hired a consultant (at $150/hour, NOT covered by any insurance I'm aware of). After trying one or two such sessions, though, we as a family decided to go it alone.
Recently, I've been in conversation with an RDI therapist who explained that RDI consultants really don't work with children at all - but instead train and work with parents so that the parents can work effectively with their children. Like Floortime, RDI is not covered by any insurance; and, like therapists trained in every one of the behavioral and developmental interventions available, RDI consultants charge thousands of dollars a year.
Of course, parents can get involved with RDI (or SonRise, or ABA, or...) as I did: read the books, watch the videos, attend the conferences, and do your best. I must say that, at the time (when my son was smaller) I really did feel good about my work with Floortime, and had no qualms about taking on the role of therapist. And at that time, while I would have liked a consultant to help me along, I simply didn't have the cash - nor, perhaps, the intense desire - required.
Now, though, I find I'm indignant about the ways in which autism therapy is provided. WHY should parents be expected to become therapists? WHY do therapists charge such a fortune (and it's very rare to find a therapist with a sliding scale)? WHY are doctors so unwilling to suggest specific directions and provide parents with resources and names of recommended therapists?
Many of you are doing just what I did: you're acting as therapists to your children. How do you feel about your role? Is it reasonable and acceptable to you - or do you feel that it was the only choice available given the cost of hiring an outside consultant or therapist? Share your thoughts!
http://autism.about.com/b/2008/06/20/should-autism-parents-have-to-become-therapists-whats-your-opinion.htm
From Lisa Jo Rudy,
Should Autism Parents Have to Become Therapists? What's Your Opinion?
Parents of children with physical illnesses rely on medical doctors (the experts) to diagnose, prescribe and treat their children. Parents of children with mental illnesses, for the most part, rely on psychiatrists, psychologists, neurologists and similarly credentialed professionals to sort out their children's physical and psychological needs and treat them.
Parents of children with autism may not diagnose their children. But once that diagnosis is complete, it's up to parents to research the treatment options and select those they personally feel are most appropriate. Once they've made the selection, it's not unusual for parents to actually administer the treatments.
That's tough enough when parents choose to put their children on special diets or supplements. It can becoming overwhelming when the treatment of choice is hours-a-day interventions such as SonRise, Floortime or RDI (Relationship Development Intervention). Some parents even go so far as to get training in and provide their own child with Applied Behavior Analysis.
As it happens, I chose to use Floortime therapy with my son. Like many parents, I read the books... attended the conferences... watched the videos... and did my own thing. I worked with my child for hours a day, twenty minutes at a time, entirely on my own. I saw results - and so I kept at it. Had I chosen to, I could have hired a consultant (at $150/hour, NOT covered by any insurance I'm aware of). After trying one or two such sessions, though, we as a family decided to go it alone.
Recently, I've been in conversation with an RDI therapist who explained that RDI consultants really don't work with children at all - but instead train and work with parents so that the parents can work effectively with their children. Like Floortime, RDI is not covered by any insurance; and, like therapists trained in every one of the behavioral and developmental interventions available, RDI consultants charge thousands of dollars a year.
Of course, parents can get involved with RDI (or SonRise, or ABA, or...) as I did: read the books, watch the videos, attend the conferences, and do your best. I must say that, at the time (when my son was smaller) I really did feel good about my work with Floortime, and had no qualms about taking on the role of therapist. And at that time, while I would have liked a consultant to help me along, I simply didn't have the cash - nor, perhaps, the intense desire - required.
Now, though, I find I'm indignant about the ways in which autism therapy is provided. WHY should parents be expected to become therapists? WHY do therapists charge such a fortune (and it's very rare to find a therapist with a sliding scale)? WHY are doctors so unwilling to suggest specific directions and provide parents with resources and names of recommended therapists?
Many of you are doing just what I did: you're acting as therapists to your children. How do you feel about your role? Is it reasonable and acceptable to you - or do you feel that it was the only choice available given the cost of hiring an outside consultant or therapist? Share your thoughts!
http://autism.about.com/b/2008/06/20/should-autism-parents-have-to-become-therapists-whats-your-opinion.htm
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
The benefit to parents being trained to provide these different types of therapy at home (at least with speech and RDI) is that even if the parent has formal sessions with the child, the therapy will more easily flow over to the other parts of the day that the parent and child are together (maximizing the hours of therapy without having the therapist come and live with them).
They do this at my son's school too. He has a certain amount of time that he spends every week with the SLP, but then she consults with his paraprofessional so that his speech therapy in effect continues through out the day. The idea is that this will increase both acquisition and generalization accross situations.
As far as therapists charging a fortune. I've been wondering lately if its just a supply and demand thing or if the group that certifies the therapist has the ability to influence (or control) his or her rates. There are some therapies I would love to try if only I could afford to pay for them and the stupid thing is that in the long run the cost of him not getting the therapies may actually be more than the exhorbitant fees therapists charge. But not all of the information to do them myself seems to be publicly available.
I'm so grateful that he gets all of these services but I also sit in on every single session because I want to learn all I can - I work with him all the time - even if it's just the way I phrase something {things I learned from ABA}, or to do play therapy with him on the weekends. I have given up my personal life for right now because Nick needed me to do so - I know that not every parent has the abitlity do that. I am suffering financially but have weighed the consequences and feel I am doing what is best for him.
I think all the extra time I spend with him is paying off - it's still two steps forward one step back sometimes but he's doing awesome and I get hugs and kisses now and I never got those before January!!!!!! I would do it over again just for the smiles that I get from him - again something almost never seen before January! And to hear him speak is simply awesome - he still does not communicate primaraly with words but he talks some now. :-)