My son will be 3 next month. We have a sensory diagnosis, with some speech challenges diagnosed as well. We go for our ADOS autism screening on Monday. I'm trying to mentally and emotionally prepare for it. Can anyone give me any idea of what to expect from the ADOS?
DS is verbal, and speaks mostly in 2-3 word sentences, but also has a lot of echolalia mixed in there. I call him the little drummer boy because if you let him, he would drum his entire day away. And he will drum on anything. A tree outside can become a drum. The leaves up high are the symbols, and he'll find a stone or something to be the base drum. It is quite cute actually, and most people who see him do it get a kick out of it...accept me. He can now be redirected from the drums, but we've been doing FloorTime therapy for about six months so that did not happen "naturally." He has been known to zone out as well, but he is easier to re-engage now that we have been doing FT as well. But, if he feels stressed, much of the new skills he's learned begin to fade away. He also tends to lose his words and revert back to sound effects and beat boxing when he is stressed as well. He will just start creating random drum beats "boom boom pshshsh boom boom boom pshshshs" and ignoring you. But, once he calms himself down, he comes back and engages well.
He does do pretend play, but very basic. He may decide his elephant wants to go down the slide, or that it's hungry and feed it. With a lot of floortime work I've gotten him to start spontaneously using his microwave on his pretend kitchen, but that is only occasionally.
I guess I'm sharing all of that because I'm mentally categorizing all of the "concerning" behaviors as I prepare for the ADOS evaluation. It is our first step in finding out officially if he is or is not on the spectrum. We have an OT who says no, an ST who says maybe, and another ST who evaluated him recently who said he is because of the echolalia, and the restricted interests in drumming. He is also gifted in music. If he is listening to a song, he will begin to point out bongos, violin, etc as he hears it. He has also learned to play several adult songs on the drums. This is also being pointed to as a "symptom" of ASD.
This is such a stressful time. Any advice from mom's who have been through this would be great. I also want to prepare my little guy if I can so he is not overwhelmed.
Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)
This is such a growing experience. It really challenges me to look at my own expectations, hang ups and perfectionist attitude. Boy oh boy!!
While I don't have personal experience, I've heard the ADOS test is not stressful for the child. Someone just tries to play different games with him to see how much he will participate. I like the book The Spark by Kristine Barnett. She is raising an autistic child (who is also a genius) and I really like her belief in 'muchness' as a way to feed the mind.
The ADOS is play based - so they will set up a scenario and try to encourage your little one to participate, imitate, etc. So they will have a birthday cake, pretend to light candles, sing, etc. Or get a doll, bed, and blanket then pretend it is bed time. The ADOS is only one tool and has some major flaws (it is notoriously unreliable for kids with delayed language so if your DS is very verbal that shouldn't matter though it can also be heavily reliant on familiarity, so if your DS hasn't been to a bunch of birthday parties, the cake and candles won't make much sense to him, etc.)
That said, it is a good start on the road to getting a diagnosis.
Totally agree with mamarhu said, no matter what official label they put on any child, it doesn't change who they are or how much you love them. I will also add that diagnoses, especially at a young age, are just a snapshot in time. Not that they are necessarily inaccurate, but almost everyone I know with special needs children go through a series of diagnoses as they try to understand exactly what's up with any given child. Last year in Pediatrics (Feb 2012) which is a medical journal for pediatricians, they found that about 30-40 % of ASD diagnoses given before the age of 5 were gone by the time those children reached 11. Often the ASD dx was replaced with something different (ADHD, other developmental delays, etc) but it really goes to show that you can't place too much emphasis on any one diagnosis. I've started thinking of them as guideposts in a confusing journey :)
Hope that helps!
Thinking about you and sending you hugs!
The ADOS shouldn't be too stressful, but it is designed to get a kid to demonstrate behaviors typical of ASD in a short period of time, if they are there.
I watched my son's ADOS and did some reading about it.
The ADOS is structured. The person doing the assessment will take the child into a room, away from the parents. The parents may watch from another room. The interviewer will then start a sequence of activities. The child and the interviewer will play with some toys. The interviewer will talk to the child to see how he or she responds with the toys. The interviewer will ask the child some questions and talk with the child. The child will be invited to play with some other toys during the "break." The interviewer will tell the child a story and ask the child to tell the story back. (This was my kid's favorite part. He really thought that part was fun.) I think on the younger kids' test they may play with bubbles. That's about it. The interviewer also watches closely for stims and repetitive behaviors. The interviewer is also looking for communication skills and social understanding and social skills.
As long as your child can separate from you without too much trouble, the ADOS is pretty painless. I found it really helpful. Before the ADOS, I would have said that my child did not have stims. When I watched him with the interviewer, though, it was clear that he does have stims. He finger postures all the time. It's just very small movements and not very distracting when you are talking with him.