Hello everyone. I am new to this board. I am not even sure this is the right place to be. I took my son in to the neurologist yesterday to be evaluated for Autism. They doctor said his first impression is not Autism, but selective mutism. I am utterly confused by this despite all that I have read. It does not explain some of his other behaviors. He is scheduled for an EEG tomorrow, and MRI soon, and tons of bloodwork to test for the normal stuff, cassin and gluten allergies, and chromosome abnormalities. I guess he wants to rule other things out. I was just wondering if anyone else was dealing with this.
11/2012, 12/2012, 2/2013
First welcome to the board. I'm Angela. I have two special kiddos. Dakota who is mildly autistic. And Eli was has Congenital Heart Disease (Shone's Syndrome), Subclavian Steal Syndrome, Auditory Processing Disorder and prior history of stroke. Eli's the one I talk about the most since he has the most medical issues.
As far as your son, did they actually complete the ADOS? If not, make sure it gets done as part of the process. I never trust a "first impression" thing. They said that about Dakota REPEATEDLY. After they did the ADOS it proved he was. Go with your gut. It is good they are doing some other testing to rule things out. Have they done a hearing test? I assume the answer is yes, but you never know. (((Hugs))) for all the upcoming testing.
Welcome. I know very little about it other than it's a sort of social anxiety thing. Does that fit him? Does he seem to be fine with you but then extremely shy around others?
I'm Natalie, mom to Sam & Tom. Tom was born with an incomplete unilateral cleft lip (it didn't go all the way up into his nose and it was only on one side).
Natalie & Dan - June 2, 2001
Samma - Nov. 5, 2004
Tommy - Oct. 19, 2007
I hang out here because my DSS has/had heart issues. He just had two heart valves replaced and a graft of his ascending aorta, so hopefully he is “good to go for life” as his surgeon put it.
I don’t know much about autism and selective mutism. The only thing I do know is that my great grandfather (who I’m told was brilliant, socially inept, and has hundreds of published inventions) did not speak until he was 6 years old. He then did so in complete complex sentences. Selective mutism isn’t very common.
I hope people on this site are helpful in terms of tests and such. Glad you found us (sorry you had to)!
Skyler Dylan 22 April 1999
Reed Aslan 17 June 2007 ~ 8 September 2008
Ivy Rayne 3 May 2009
Leo Spencer 2 Sept 2010
Forrest Reed 15 Aug 2012
Angela- hello. I used to lurk on your 2009 birthboard cause my daughter was born in June. I remeber reading some about Dakota and Eli. What is the ADOS? The doctor never mentioned it. Josh has had two hearing test. The first he didnt cooperate with. The second went better but he was unable to finish it. Still both came back normal.
Natalie- they selective mutism and social axiety does fit.him, but there are other issues it doesnt cover. The pedi is concerned cause he cant dress himself, write his name, or ride a bike. He also does this weird eye blinking thing in social situations or pulls on his clothing. He is behind verbally. He didnt speak is fist word til 2 and short sentence til almost 3. He hasnt reach.the story telling milestone. He freaks out at loud noises. He has sensory.issues- wont touch certain things and wont walk on sand or dirt without shoes on. He was really bad at all this along with avoiding eye contact and freaking out in public. The school program he is in has helped tramendously. He now has some good days, but he has started pushing kids to be first imn line, running in line, and laughing and making faces at the teacher when corrected. Oh and he recently started shaking and nodding his head. Since Josh has good days he doesntthink he is autistic.
sarah- hello. I also follow you a little bit too. It is good to know that this can be easily overcome.
11/2012, 12/2012, 2/2013
The ADOS is the formal test they use to determine if someone fits on the spectrum. I REALLY REALLY REALLY want to encourage you to get them to do it. The worst it's going to show is that he isn't autistic. But from what you are saying he sounds like Dakota. High functioning autistic kids are often missed. They can be delayed physically as you mention your son is (i.e. can't ride the bike). The sensory stuff too. My friends son had a problem with them doing the ADOS and when they claimed they did they said they didn't finish because he wouldn't cooperate. This is where a HUGE amount of frustration is going to come in (not that you aren't already there), but the doctors are going to fight because most typically are looking for signs for severely autistic kids. Most don't really understand what "high functioning" looks like (yes even the experts). I truly believe Dakota does as well as he does because I got him help so early. And NO the doctors did NOT want to listen to me. The neurodevelopment doctor even dragged his feet giving me the referral. But the specialist conducting the test saw things even I missed. Of course I'm not a doctor, but I am a mom with experience. I think some of the tests they may be doing might be a Fragile-X test (this is I believe a very standard test they do on kids with autistic traits, but they don't believe are autistic). They did it on Dakota as well, because they typically have autistic traits.
Seriously, follow your gut. If you think he needs to actual test make sure they do it. I can honestly CLEARLY remember the day I walked into the pedi's office with the report that said he was on the spectrum. When we left she walked straight to her office, sat down and read the report. She was COMPLETELY blown away. Up until that point she didn't believe me there was anything wrong. And I might add that Dakota did not talk until he was 3. It was da da da da da da da da da eat. Da da da da da da da da. There were a few VERY basic words he said but that was it. And I can tell you even now people miss things. In fact the SLP at school tried to tell me for months that there was nothing wrong with Dakota's speech. I forced them to test him. And it showed his expressive language is behind. She also noticed some other things as well even though technically he did pass she doesn't think he understands as much when you talk to him as it appears he does (if that makes sense). For example she doesn't think he actually understands what the word 'after' means.
Hope some of this helps and I didn't scare you. I know I already said it, but follow your gut.
Delayed speech, sensory issues, and repetitive motions (e.g. the eye blinking) are all big signs of Autism. I agree that you should get it looked into further by a licensed psychologist. Some other signs that you don't mention are the inability to deal with change in routines, focusing on parts of a toy instead of the whole toy or using toys in atypical ways (lining them up, spinning the wheels, etc.), not making eye contact, not being able to understand non-verbal communication (tone of voice, facial expressions, etc.), and sometimes self-injurious behaviors like hitting or biting oneself, head banging, etc.
I really hope you find some answers.
Deb ................. DH Norm
DS Caleb, 13 ...... DS Patrick, 12
DS Isaiah, 8 ......... DS Thomas, 7
DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
William, 14 weeks, 4/11/12