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A good news bad news day

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Cap'n Clutch

Cap'n Clutch

We went to a follow up appointment regarding a cognitive assessment of my daughter Zoe for the purpose of determining what funding she will receive for Autism therapy.

The good news: She was assessed at the upper limit of average in the non verbal portions of her assessment. She was also assessed as minimally autistic with only residual Autistic Spectrum Disorder traits.

We have been offered direct funding and will be able to keep Zoe in her current therapy center.

The bad news: We've only been offered 6 months of therapy when her current senior therapist, her previous senior therapist and the psychologist overseeing her therapy have all said she needs another year.

There's still hope as there's an appeals process and if that fails we'll suck it up and rely on family support in order to get her that extra 6 months.

"A child with Autism is not ignoring you, they are waiting for you to enter their world."

- Unknown Author
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Post Wed Jul 24, 2013 7:09 am by tim1_2

Well I guess the best part of all this is that she seems to be progressing terrificly. Obviously the financial portion sucks, but on the whole, I'd say that's more good news than bad news!

Cap'n Clutch

Post Thu Jul 25, 2013 6:17 pm by Cap'n Clutch

This sounds a lot like my daughter:

"Hyperlexia, type III

This is a less frequent form of hyperlexia and it is the one sometimes inappropriately diagnosed as “autism” because of the failure to distinguish ‘autistic-like’ symptoms from autistic spectrum disorder. These children also read early, often show striking memorization abilities, and sometimes have precocious abilities in other areas as well. They may have ‘autistic-like’ behaviors for a period of time. For example, they may show unusual sensory sensitivity (to sounds or touch or taste). They usually seek, and do not avoid affection, and in that sense are more social, outgoing, interactive and less withdrawn than children with autistic spectrum disorder. They do tend to make eye contact and can be very interactive with persons close to them. There may be fascination with, or intense insistence on, routine and resistance to change. These children seem quite bright, inquisitive and precocious in some areas overall. Interest in, and mastery of, reading coupled with memory powers memorization is conspicuous and often quite amazing. There may other ‘autistic-like’ symptoms or behaviors as well, such as ‘stimming’ for example But over time the autistic behaviors and symptoms fade and, as it turns out, these children then are quite normal (neurotypical) for their age."


Post Mon Jul 29, 2013 11:10 pm by Ev

i'm ignorant on this subject. What does the therapist do? Could it be something that can be done at home, with online help from articles/youtube, etc. ?

Cap'n Clutch

Post Tue Jul 30, 2013 12:11 pm by Cap'n Clutch

Ev wrote:i'm ignorant on this subject. What does the therapist do? Could it be something that can be done at home, with online help from articles/youtube, etc. ?

Not effectively. This is a program called Intensive Behavioral Intervention and only works in about 50% of cases. It's one to one therapy by college educated therapists who have a senior therapist to design programs and track what they call "acquisition rates" and adjust accordingly based on those rates, her strengths and weaknesses. The entire program is also overseen by a Psychologist. It's scientifically proven evidence based methods. To dumb it down though it's all about positively reinforcing the behaviors and actions you want them to repeat so she loves it there because they constantly praise her when she's "getting it".


Post Tue Jul 30, 2013 12:23 pm by Hoags

I just wanted to say I hope everything turns out OK with your daughter.

I don't want to derail this thread but I know a little bit how you are feeling. My son was 'suspected' of ASD at 18 months because he is behind on certain developmental milestones. He doesn't talk much and he didn't point at all at that point.

I don't really know what this all means anymore, he is 23 months now and he points at everything but he is still kind of quiet and doesn't talk much at all. We went to a screening by First Words as recommended by our doctor. And we were recommended for occupational and speech therapy at CHEO but 5 months later we haven't gotten anything from them except a letter basically saying "yes we got your application, stay tuned". Although the therapist who did the assessment said "He's not autistic".

Nowhere near the same thing but the fear of your kids having difficulties is pretty scary, I lost a lot of sleep over the confusion and still worry about it since I know nothing months later.

Cap'n Clutch

Post Tue Jul 30, 2013 12:47 pm by Cap'n Clutch

It was something we faced head on and always felt she was bright and "high functioning". I actually don't envy your position because it's easier and quicker to get services if your child has the ASD diagnosis than not.

If I were you I'd contact Ottawa Children's Treatment Center (OCTC) and get her on the list for speech and Occupational therapy.

The other thing they'll do is assign a person to your case and they'll send someone to the daycare to provide advice to the caregivers on how to help your child.

Cap'n Clutch

Post Tue Jul 30, 2013 12:48 pm by Cap'n Clutch

One of the biggest hurdles is getting the diagnosis in a lot of cases and for us that was the easy part thankfully. Years (Critical years) can be lost just fighting for the right diagnosis. The most effective time for treating ASD is between the ages of 2 and 5.

Cap'n Clutch

Post Tue Jul 30, 2013 12:50 pm by Cap'n Clutch

My next biggest piece of advice is get your child's doctor to refer the child to a psychologist who can give an official diagnosis ASAP


Post Tue Jul 30, 2013 1:36 pm by Hoags

Thanks for the tips and Support Cap'n, I will look into OCTC, never heard of it before.

Cap'n Clutch

Post Tue Jul 30, 2013 2:58 pm by Cap'n Clutch

My pleasure. One thing that delayed us was not getting on the waiting list right away and that delayed things by about 3 months because this stuff is so disorganised and requires contacting different groups.

Cap'n Clutch

Post Wed Aug 28, 2013 8:50 am by Cap'n Clutch

More awesome news for my daughter.

About a year and a half ago she had a speech and language therapy assessment for her age as compared to neurotypical children.

Her results then:
General understanding of language: 4th percentile
Expressive language: 2nd percentile
Receptive language: 3rd percentile

Her results now for her age group:
General understanding of language: 63rd percentile
Expressive language: 62nd percentile
Receptive language: 63rd percentile


Post Thu Aug 29, 2013 7:50 am by tim1_2

Cap'n, that is just awesome. It must make you feel awesome and justified, for all the extra time, expense, and effort.


Cap'n Clutch

Post Mon Sep 02, 2013 8:50 pm by Cap'n Clutch

It's thrilling and more than I could have first imagined for our daughter. I always knew she was brilliant; it was just a matter of unlocking that brain. It seems we're finding the last few numbers to the combination.


Post Mon Sep 02, 2013 10:23 pm by wprager (Online)

Cap'n Clutch wrote:It's thrilling and more than I could have first imagined for our daughter.  I always knew she was brilliant; it was just a matter of unlocking that brain.  It seems we're finding the last few numbers to the combination.
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