Hi all,
Ive posted this on the special needs board too but it seems quiet there, so sorry for the duplicate.
Earlier this year the leader of my sons (now 27mths) mother and baby playgroup insisted I should take him to see someone, after spending nearly a year with us. I knew he had obsessions, was really difficult to engage and still hadn't said his first word at 23mths but was shocked at how strongly she felt about it so I set about doing something. She is also a qualified toddler autism screener.
We live abroad in a private health system so its pretty easy to access the specialists you need to by yourself.
So I addressed what bothered me most and thats the language delay. I though that this was DS main problem and wanted to shrug off the other concerns as actually he is very sociable and happy. However on the first appt with her I was shocked he spent the whole time obsessively playing with one cupboard door, never reacted to his name, wouldn't engage in ANYTHING. It was awful and upsetting to watch. But I realized that actually he is like this at home, its just he is number 3 child in as many years so it has always suited us that he's always played by himself. The speech therapist said she wasn't taking on anymore patients but felt so strongly about him needing help that she wouldn't let me leave without bringing him back for more treatment. Of course I agreed.
In 3 months he's made GREAT progress, there is much more eye contact and hand pointing, not many more words, and he has found enjoyment in engaging. At home he continues to ignore his name and plays obsessively with cars and anything with a door on it. He recently started creche and they've pulled me aside everyday complaining he is so difficult to engage, doesn't understand basic instructions and that they shout at him all morning and he just laughs at them. The rest of the time he is in a corner on his favorite train set or castle.
In addition to this at home he has never slept through the night, he screams with night terrors. He always has runny stools. Taking him out anywhere where he spots a lift, or automatic doors can turn into a 20 minute battle to get him away. Unlike my other kids I cannot distract him to focus on anything else and he will scream and scream till we get back to the lifts and doors.
So I hunt out THE best autism specialist. She was wonderful and warm and knowledgeable so we were delighted to have found someone that wanted to help get to the bottom of it. We had a first meeting where we tell her what everyone has been saying and she says she saw some red flags whilst he was playing and that they would video him and do the ADOS test.
Today we went to the Speech therapist where he engaged a little, but also was obsessive as usual about his one picture and sat under the table for the majority and shivered with terror touching playdoh.
We went to the ADOS test after and where she had brought a wonderful guy who just blew me away with his ability to get him engaged. He responded so well and there were smiles and eye contact and pointing. I was desperately confused. I was delighted to see this little side of him was in there but so sad we barely see it. She said she's on the fence right now about a diagnosis but will score the video and call me on Monday.
My problem is this. We were in an empty room with what was effectively his own personal clown with toys that he likes, bubbles etc. It was not representative of the struggles we deal with in his daily life. There were no doors, no toys with doors, no busy environment that makes him seek out comfort. No awful dinner time struggles as he REFUSES to eat without a distraction like a car or an iPad. We went to Disney and he only wanted to play with doors to the point where the struggles were physical. His sisters birthday party this weekend, he was in meltdown at the stimulation but I put him by a sliding door and he played with it and calmed down.
I don't want to come across as wanting him to get a diagnosis. But the little boy I saw today is not who we deal with and I know he will get great scores and not be diagnosed. She said herself she will take into account what we've told her and she'll call the speech therapist to get a bigger picture. But now I just struggle with the idea that perhaps its just us as useless parents that aren't able to find the little boy they did and that all of this has been fuss over nothing. Which I would find hugely embarrassing. I find it really difficult to know my mind anymore, Ive got friends that say he's fine and professionals that think he needs help. I find Im always trying to analyze him and its exhausting. She asked me if I have a gut instinct that something is wrong and I said I just don't know anymore, that I know he is different but is it a problem. Im not sure.
Has anyone else been through this and found their child was different during the ADOS and didn't represent the bigger picture. How did you deal with this?