Could I have some advice about screening for Autism?

[Tiff]

Claire has been attending a resource teacher's playgroup and has been evaluated by an occupational therapist along with a speech language pathologist. Autism has been brought up a bunch of times, and after her speech assessment today we're being urged to have her fully screened to see if she's on the spectrum.

I don't really know what to expect, we were told we needed a pediatrician (its not common here to have one unless there is an issue) and she'll go through an assessment that one of us (me or my husband) can sit in on but we're not allowed to interact at all with her.

I was curious as to what goes on during these screenings. I really struggled with writing in here as I didn't want to upset anyone. Although if it isn't Autism then they will go on to the next disorder as there is "something" (their words, not mine) that is causing her not to develop as per typical 3 year olds.

Any help/advice would be greatly appreciated! Thank you!

 

[sun]

I don't know how much help I'll be, but my son had a general evaluation because of his delays. This included looking at signs of ASD, other developmental delays, and genetic testing. We are also in Ontario.

We had a group assess him while I was present on several different occasions. The entire thing was headed by a Developmental Pediatrician and the different specialties doing the assessments were Occupational Therapy, Physiotherapy, Behavioural Therapy, and Speech Therapy. They did all types of different play activities with him. Not too sure what they will do with your daughter as she is older, but with my son they did lots of things that assessed his attention skills, speech and sound making abilities, and an evaluation of his receptive language. His eating, gross and fine motor skills were also looked at. It depends what your daughters areas of difficulty are who will be in the room and how they will do the screening. My son has a global delay so was seen by more people.

 

[Tiff]

Thank you! Yes, that helps a lot.

We don't know if its Autism, not until she has the screening. If its not Autism then its something else as there's something "there" if that makes sense.

We were bombarded with so much information yesterday that we didn't even think to ask these questions.

 

[JASMAK]

We had to have assessments from several different professionals. We had several speech assessments. We had the OT assessment. The hearing test. A developmental pediatrician. She was also seeing a infant development worker. This was all done through the Child Development Centre. After all those assessments were done (took about 10mths) then she had the all day appointment with the children's neropsychologist. The assessment was FUN for Makena. We sat (both hubby and I) in the room with Makena. They just play with them...get them to do little testing things to check all areas of development. Makena had little to no speech, but to be sure, they tested her on the one for verbal and one for non-verbal and she scored in the ASD for both tests. They gave us a break while she scored it. Then everyone involved came for a meeting, and I chose to have my sister there. The neuro-psychologist actually told hubby and I how she scored BEFORE the meeting, which, apparently, they don't usually do. THey had a nice private room for us and we ate our lunch in there. We got some private time in there after they told us. After the meeting, I was just glad it was done. I had the worst headache....and I just wanted to go home with Makena. Then we phoned some family and told them. I cried a bit. But when I kissed Makena that night...I remember thinking..nothing has changed. You are still my Makena. No label will change that, now we can just work on getting you better.

 

[Tiff]

Massive hun! I can imagine it was very stressful and upsetting for sure!

Your last sentence is how I feel about it 100%. It doesn't matter what they label my daughter with. She's still my girl and I love her to pieces. I've been having a harder time with my mother truthfully. Not even 15 mins after I was on the phone with her explaining everything that will be happening, she called to talk about how she was on "www.autism.ca" etc blah blah blah.

Kind of had to reel her back a bit and explain that she hasn't been diagnosed yet. Until then Google and all its stuff is off-limits (iywkim?) I don't want our family to start "treating" something that may or may not be there.

Hope that makes sense.

 

[JASMAK]

Oh yes...my mother is the same, and even though Makena is diagnosed now (was diagnosed when she was 2 years, 10 months) I still hate hate hate when she calls me about something she googled, or try this diet, or I saw this show. I don't know why, but it really bothers me..I guess I just want everyone to see Makena as Makena, not Makena who has autism. That is for me and hubby to worry about.

 

[Maze]

Hi,

I am also in Ontario (Ottawa) and I didn't need a pediatrician for my son to be referred for screening, my regular GP had the authority for the referral. My son met with a behavioral specialist first, then he had his hearing tested and THEN he met with an autism specialist at CHEO where he was formally diagnosed. We were with him the entire time though, except when he went into the special room to have his hearing tested. In truth, the screening process isn't too stressful... it is getting on all the wait lists for support, therapy, and IBI after confirmation. Man it is overwhelming... but SO worth it.

I also got pressured into trying the GF/CF diet and after two years of that I said enough is enough, tried him off it... and he continued to progress despite the change. I had to tell the grandparents to stop trying to find a cure to my kid. He isn't sick, he is just Dominic.

Good luck!

 

[Midnight_Fairy]

Hi hun, my son had ADOS test xxx

 

[Tiff]

Well we have our referral for the Pediatrician who will order us the ADOS test. We got our findings back from the OT, she feels that Claire will need therapy (although it will not be implemented before she's to start school in the fall). They feel that Claire will need an assistant for her when she starts school... IF she's even ready to start school this September.

I think hubby and I have decided that we'll hold off on her starting school and get her the therapy she needs to get her at a better hold on what she needs help on. The referral isn't until July so we won't know just yet how long we'll be before she gets an evaluation/diagnosis (IF there's even a diagnosis).

 

[sun]

We're probably waiting a year before we start Bun in school as well. Part of that is his birthday - he will be one of the youngest in the class in addition to any other issues he might have, so I think we'll be keeping him back. He gets so much from his preschool that I would be happy for him to continue that for an extra year. I notice Claire has a late birthday too. Is junior kindergarten also full day where you are? Our school just started full day junior K and I think that would be way too much as well. x

Glad to hear that things are moving in regards to the evaluation. xx