"Wait & See" - The wind out of my sails...

[countryduck]

Hey again.
Well after receiving a copy of my son's (J, nearly 3) evaluation last week, I immediately forwarded it to the neuropsychologist that we are working with at the autism clinic.  In the report they recommended further Autism testing since he did show in the moderate range on the CARS scale, as well as, some of the other behavioral issues and lack of speech.  I was really hoping this would push the Autism diagnostic clinic to the near future.

Well that is not gonna happen.  :(

He wants to be available on a consultation basis and see where J is in about 6 months since he is just starting Speech & will soon start Occupational Therapy as well.

While on one hand I can totally see how this is a good approach since you don't want to mis-label someone with autism if they only had speech/sensory issues.  On the other hand - this advocate mother - doesn't want to wait the 6 months.  What if he doesn't improve significantly?  Then we will be looking back at 6 months of wasted time to get him the therapy he needs.

I just feel like I am not able to express just how serious this is to these people.  How can they be comfortable with waiting when you have a little boy who at the perfect time to intervene?  I personally would rather him carry the autism label starting now and figure out in 6 months that it wasn't autism afterall.  Better safe than sorry!  Besides that, we rarely go out of this house without dh because it is too much to handle if/when J has a meltdown.  I also have a 5 year old with sensory/speech issues and a 7 month old with sensory issues.  It is not a pretty sight when one of them gets upset about something - let alone 2 or all 3!

I just feel like the wind has been taken out of my sails.  :(

[Emmeline II]

Is the label necessary for him to get appropriate therapy?

This article from Time talks about the apparent difference that early intensive intervention may make; perhaps you can use this information in your argument to begin now.

Study: Autistic Kids May Benefit from Early Therapy - TIME

Are there other locations that may offer any of these therapy programs:  RDI, Miller Method, Floortime, Son Rise, or More Than Words?

We had a "wait and see" family therapist. After 3 months we were ready to move on to the psychologist but the FT wanted to "wait and see" how he did in 1st grade. Looking back (and considering ds' extensive "rap sheet" in Kindergaten) I wonder where this magical improvement was supposed to come from. Then, towards the end of that summer ds decided to practice "fire bending" in his Aunt's bathroom, so we took him to a psychiatrist (ADHD/ODD) and a CBT.

Edited by Emmeline II - 6/8/11 at 7:06am

[countryduck]

Originally Posted by Emmeline II 

Is the label necessary for him to get appropriate therapy?

This article from Time talks about the apparent difference that early intensive intervention may make; perhaps you can use this information in your argument to begin now.

Study: Autistic Kids May Benefit from Early Therapy - TIME

Are there other locations that may offer any of these therapy programs:  RDI, Miller Method, Floortime, Son Rise, or More Than Words?

We had a "wait and see" family therapist. After 3 months we were ready to move on to the psychologist but the FT wanted to "wait and see" how he did in 1st grade. Looking back (and considering ds' extensive "rap sheet" in Kindergaten) I wonder where this magical improvement was supposed to come from. Then, towards the end of that summer ds decided to practice "fire bending" in his Aunt's bathroom, so we took him to a psychiatrist (ADHD/ODD) and a CBT.

Thank you for replying!  I am not exactly sure if the label is needed or not.  I think it would benefit us more in our situation.  We live in a rural area and unfortunately don't have anyone closer than 1.5 hour drive.  We have ST/OT within a 20 min drive but I also wonder about how much they have actually dealt with children like DS.  We also have medicaid and common sense tells me that in order to get them to cover appropriate therapies, they will probably want a firm diagnosis instead of just 'let's try this' approach.

I am looking at AutismSpeaks.com to find various types of providers and so far everyone is at least about 1 hour away.  I have no problem driving to get the appropriate therapy but there again, I need to know if it is needed.

Who would have thought that you had to fight so hard to get appropriate care for your child when the signs are so obvious and in your face?
 

[crunchy_mommy]

DS & I are operating without a real diagnosis but the circumstances are totally different than yours and he is able to get what he needs in terms of services without anything more than an umbrella diagnosis (and he does not appear to have autism). If you really feel like a diagnosis is critical to him getting the proper therapies, I would see if you can get a second opinion. I think if you look hard enough you can find someone who will make the diagnosis, especially if the symptoms are as obvious as you feel they are!!

[beenmum]

Let me preface this by saying that I understood that you are recieving services currently w/o having the DX.

In Autism you teat systmatically. If he has speech issues, you address the speech issues. If he has sensory issues, you treat the sensory issues being presented.

The ASD label doesnt really matter if you have a good set of therapists. They are treating the probelms that they see. If he has a receptive speech delay, that is the area they focus on. The reasoning behind the delay (if not identifiable such as a cleft palate or hearing issue) is not going to change the therapy.

IOW, they are not treating the Autism. They are treating the speech/language issue that MAY be caused by autism.

Does that make sense?

They can still treat the issues properly w/o the dx if they have identified them.