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greyhoundlover · 09-02-2010, 03:16 PM

I desperately need help. I am concerned my son might be on the Autism spectrum. I have taken him to my Ped. and it looks like it's going to be a long process. I am looking to get him evaluated as soon as possible and into therapy ASAP. Can somebody please point me in the right direction.

Thanks
Sheri

mum_of_four · 09-02-2010, 03:20 PM

Unfortunately I think the process is very long and there are no ways to speed it up. If you've been to see a ped, I believe you will be looking for a referral to either a dev ped or CPRI. I'm not sure though.

Good luck to you!

greyhoundlover · 09-02-2010, 03:27 PM

My son's Ped is referring us to a developmental ped. But isn't there somewhere I can go privately and pay?

Leigh · 09-02-2010, 03:29 PM

The states.

But that won't get you services here.

Unfortunately it's a long process

twinmommy · 09-02-2010, 03:57 PM

You can have him assessed privately, but as Leigh said it will not get you access to the services any quicker.

DS was diagnosed June 11, 2009. Approved for IBI February 2010 and it looks like we may start his IBI for September 2012, the absolute earliest would be this January 2011.

Private IBI therapy is $50,000 per year. Ask to be put on a cancellation list. We got in within 7 months of referral because we took a canceled appointment and we were willing to meet with whatever dev. ped had availability because we knew the diagnosis was the first step in being put on the wait list.

twinmommy · 09-02-2010, 04:00 PM

Information from Autism Ontario

assessment and diagnosis

Autism Ontario | Services

greyhoundlover · 09-02-2010, 04:55 PM

So what you're telling me is it could take up to three years from the time I get my son assessed to the time he starts therapy? I don't understand how it can take this long. Does anybody else think this is completely unacceptable?

laurensmom · 09-02-2010, 04:59 PM

It is unacceptable. I agree. Hugs to your family. A friend of mine took her DD to the Detroit for threapy. She went a couple days a week for a year or so. They paid out of pocket. Good luck.

twinmommy · 09-02-2010, 05:55 PM

Yep, it is very frustrating. It is even more frustrating that not all children with autism qualify for ABA or IBI therapy services.

We appreciate that this therapy costs a lot of money that we will not have to pay directly out of pocket but it has been a long journey since he was diagnosed with a lot of “hurry up and wait“ through the process.

twinmommy · 09-02-2010, 06:00 PM

This is the process we went through (it may have changed but I think this is still the same).

Referral from our pediatrican to developmental pediatrician. Ped sent the referral mid-december 2008. Got a call begining of June 2009 asking if we would go to an appointment the next week, we of course said yes. At that appointment he was diagnosed mild to moderate autism and was referred to IBI assessment, that took until Dec to get the first assessment, February 5th for the second assessment. The Monday after the 5th we were told verbally that he was approved for IBI.

April - we had the parent orientation for IBI
June - we had 4 weeks of parent education on the prinicples of ABA and the process of IBI.
July - we started with our clinical consultant for further observation of DS and to collect baseline data
August - reviewed observation and started to set goals to work on with DS
September - DS is starting JK with the full support of an EA while in school, he will have to be removed from school once IBI starts because he cannot attend school and IBI
We now receive 3 to 12 hours support a month from our clinical consultant until DS is picked up for IBI.

2xmom · 09-02-2010, 06:47 PM

From our experience it took about 1 year to get seen by a developmental pediatrician after the referral was made. The process is long unfortunately. We've had concerns with our son since he was 15 months old. He's now 5.5 years old, and though we've gotten some answers, we're still in the “wait-and-see“ phase. It's very frustrating. Good-luck!

greyhoundlover · 09-02-2010, 09:20 PM

Thanks ladies....I just still can't believe it takes as long as you're all saying. This is completely unacceptable. I am in tears now. How can they make us wait that long to get our babies help? Is the wait so long becasue they get severe children in faster and make the less severe children wait?

What happens to teh children that don't qualify for IBI or ABA? (Also, what does IBI and ABA satand for?) SOrry, I ma new with all this information.

twinmommy · 09-02-2010, 10:00 PM

Sorry, ABA stands for applied behaviour analysis and IBI stands for intensive behaviour intervention (ABA applied in an intensive format hence the name).

Here are some links:
Concepts of ABA and Autism Treatment
Autism Canada Foundation
What is IBI and is it the same as ABA? - Geneva Centre for Autism

I was told that the wait list is based on the date of referral/diagnosis so I don't think they choose the next child based on the severity but I don't know this for sure.

I have found the ladies here a big help in providing support and offering advice for difficult behaviours that we were/are dealing with. One thing the therapists have emphasized is the need to pick your priorities and focus on changing one thing at a time. When we got the diagnosis, I wanted to fix it all, like yesterday. I found once I focused on what was affecting him most in his daily living tasks and focused on that one thing at time, we saw huge improvements.

So for example, communication is a big one. We started using visual schedules and pictures. We always state things as first/then because he has difficulty following two step or more instructions. We got referrals to speech therapy and occupational therapy. I read and read and read a lot of info. I took an intro to ABA course online to gain more insight into ABA principles.

I am not sure if you have posted this before, but what are the concerns that you are having that makes you suspect autism?

barkingboys · 09-02-2010, 10:01 PM

Unfortunately, there are several different things that have such unacceptable wait times. Here's hoping you are able to get onto some wait lists to speed up evaluation so you have an actual diagnosis.

sabb6canada · 09-02-2010, 10:05 PM

Well, to answer you question what happens to the kids that don't get approved for IBI? My DS was not approved. He is deamed only moderatly Autistic and concernes with his devlopement to cope in IBI. So with this he was demend not a fit. Which I am not going to get into because it is a load of BS. My kid can't talk, very limited communication, looks right through me like I don't exsist, flaps arms, sways back and forth and sensory issues are another story.
Anyhoo, Pretty much what happens is you would get a referal to CPRIs Autism program and they will address what behavoural issues that are most concerning and you the parent have to implement all the therepy they teach you with some little support. And I mean little as there are many children in the same boat. DS does get OT, physo, Speech, and Phyc all through CPRI and I am greatful for what we do get for him. However, this will all change once he reaches 6 years old. Then DS gets passed on to I have no idea and I hope to God the services are just as good.