I suspect strongly your daughter suffers from Selective Mutism (with no autistic tendencies). You are lucky - when our child left school at the end of the day, she was so scared it took her approximately 45 minutes after leaving the school before she was able to speak a word. By the way, the school thought our child was mute due to abuse. Today, with proper intervention, therapy and medication one would not know she ever suffered from selective mutism. By the way, the earlier the prognosis; the better the diagnosis and three years of age is certainly not too young to begin intervention (intervention can be a simple as helping out at your daughter's school so that she feels more comfortable - but, not too much so that it become "enabling"). A professional should be able to help you here.
The best site on the internet is "selectivemutism.org" where you will find information on how to find treatment, how to deal with the school and how to best help your child as well as many articles, books, message forum, etc. You will not be able to do this without professional help. One thing I would like to add is that you purchase the book "The Ideal Classroom Setting for the Selectively Mute Child" by Dr. Elisa Shipon-**** which can be purchased from the above site - honestly, it is worth its weight in gold and you will need it for the next few years.
I'm glad to are going to see your daughter's pediatrician - if he/she is unable to help you then ask for a referral to a medical specialist with experience in anxiety disorders as a child psychiatrist or child neurologist. Also, I might add that many medical and educational professionals are not "versed" in this disorder and so someone (usually the parents) will need to educate themselves in order to advocate for their child (as well as educate the doctors and teachers). You will need to become very active for the next few years in your child's educational and social life in order to help your daughter learn how to "manage" her fears/anxieties.
If you feel that I might be of more assistance, please let me know. Hope this helps ...
Thanks for your insight. One of the things that would not make sense about autism is that is seems to be typified by a lack of awareness of others. My daughter is the opposite. The teacher said she could tell my daughter knew how to do things but would freeze if she thought the kids were watching her.
I have noticed a few times that a friendly female adult makes my daughter more comfortable than a group of kids. I've seen my daughter shut down before my eyes when a group of kids approached at school. I wonder how common that is (that groups of children frighten them).
Since she did speak to the speech therapist and the district director they have their minds made up about autism. I have been told by nurses side by side play is normal until age 5. They are listing it as not. They have issues about her eye contact. Also they don't think she is conversational enough. She didn't ask them personal questions. She wouldn't play dolls and she has never liked dolls so I'm not surprised.Their evaluation just doesn't seem to be age appropriate. Since they cannot dx her they can't affect too much outside of there school. If I let them accept her into the district for play therapy and speech and mainstream preschool I am afraid they will treat her as autistic and not Sm. Just how affective will that be???
I'm working on finding a few professionals with some experience with SM. I was told there is one at our Children's Hospital.
I've seen my daughter shut down before my eyes when a group of kids approached at school. I wonder how common that is (that groups of children frighten them). - your question -
Children who suffer from sm tend to be reluctant around adults but the opposite (as in your daughter (although less common) is not unusual. Our sm child was comfortable with men (that is less common) as most sm children tend to be more comfortable with women but as you can see, there is no hard/fast rules.
f I let them accept her into the district for play therapy and speech and mainstream preschool I am afraid they will treat her as autistic and not Sm. - your question -
Play therapy and speech therapy tend not to help our sm children because the issue is extreme anxiety but it doesn't hurt them either. Social issues are very common with children suffering from anxiety and so these two methods can help there. However, the main thrust of your question is the diagnosis - make sure you get the correct diagnosis; selective mutism is not that uncommon - some have the percentage as high a 7/1000 (I think it is quite a bit less but not at all uncommon).
I belong to a support group for parents and teacher of children suffering from anxiety (several are/have been selectively mute). From time to time one of our parents will also have the same trouble - the school will not accept the child has sm or follow instructions on how to work with him/her. So, what works is to have the diagnosing psychiatrist or neurologist or psychologist or pediatrician contact the school and discuss the "intervention and/or instructional" methods required by that student. Some have actually gone in person and met with a group of teachers, principal, therapist, etc. as well as the parents. It has never failed to work - we are lucky as the intake person/child psychologist at the local child centre also is a member of our support group. So, if there is a medical person with experience with selective mutism at a local hospital, you are very lucky (and don't hesitate to ask for assistance).
Please write if you have any questions - our support group has a wealth of knowledge and experience. Hope this helps -
Thank for the tips. The district said they don't think it's selective mutism. They didn't explain why though. I can't understand how the fact that she can't speak at school but is fine with anywhere we go does not qualify.
Do you happen to know if it is common for a Sm child to be misdiagnosed as autism?
Do you happen to know if it is common for a Sm child to be misdiagnosed as autism? - your question -
It's not common but it's not rare either. Also, many children with sm are often misdiagnosed with ADD/ADHD as well as expressive/receptive disorder. So, having a child suffering from anxiety (and selective mutism is a severe form of anxiety - usually social anxiety or generalized) misdiagnosed with some other issue is not uncommon at all. As I mentioned in my first reply, our child was thought to be mute due to trauma caused by abuse.
The main difference (in my opinion) between autism and anxiety is the "ability to connect the dots". By that I mean that the child is able to understand jokes or comprehend inferences or body language - autistic children see things only in black and white but not gray areas nor are they able to understand "abstract" things but only concrete items. Autistic children have great difficulty with comprehension of words and concepts as "under", "behind", "over", etc. The fact that your child even uses pronouns is almost a sure fact that she is not autistic. I have a nephew who is PDD-NOS (which is high functioning autism) and your daughter does not remind me of him at all. In fact, he never spoke a word until past his third birthday as words were out of his realm of comprehension at that age and then he only echo-talked for the next two years. He was not able to communicate until he was five years old.
One thing I might suggest is that you consider video-taping your child at home - speaking, interacting with others and generally being "herself". Sometimes parents in our support group had to resort to this tactic to "prove" their case. Hope this helps some -
The district did some form of the ADOS. I'm sure they used the verbal one. In the beginning of the test she was not speaking at all but would point to each puzzle piece and put them in place. After a while she did talk a bit. They used play dolls and my daughter would not play act with them. SHe has never liked dolls. At one point they laid a doll a truck and a jack in the box on the floor. She stepped on the doll to get to the jack in box (she's never played with one before). She loved the balls and balloon and asked to play more with them. She refused to feed a doll cake.
They scored her a 20! That is moderate autism. Well beyond Asperger's and PDD.I listed several things of pretend play she had done the day before but they did not consider them. She was graded only on what they saw and nothing else no matter my experience.
We are going to try and video tape her off and on. I think it will be useful for the medical professionals we are seeing later.
She understands over, under and behind.
She is very social with the family. She constantly seeks companionship and has quite a bit of commentary. I don't know how conversational it is though. Her speaking can be quite dramatic and contains a lot of inflection. She was a very easy 2 year old but at three she has many more tantrums. She has no sensory issues. She is very strong willed.
One of my worries is she has been pretty isolated before preschool. I was horribly sick through 9 months of pregnancy with my son. He was born a few months before she turned three. He had severe reflux and it made going anywhere a real ordeal. She's had very little in the way of play dates other than Sunday nursery.
I'm not sure how to judge if she can read body language. She knows what my "you're in trouble now"face is and reacts to that. She points out if another child is crying but doesn't seem to upset her. If my son cried she will run and get his pacifier and tell me he needs a bottle. She doesn't seem upset though.
I am not a doctor or medical person but I see no sign of autism in your daughter. Everything you have written I have seen many, many times with children suffering from anxiety. Within our support group I suspect we have had over three dozen children suffering from selective mutism, so nothing in your replies indicates anything unusual to me. Frustrations and tantrums are very, very common to children suffering from anxiety.
I am not familiar with the ADOS test but from what you described - your daughter acted just as most sm children would (in fact, I would say her anxiety is not as severe as many of the children from our support group). The lack of socialization last year will have had some affect on her social skills but not to the point of concern. If she does suffer from anxiety, rest assured that anxiety is inherited at birth and nothing you have done (or not done) will change that fact. In our group, many mothers blame themselves for whatever - but, it is not anyone's fault. I still think the testers were wrong - looking for autism and found selective mutism but did not know what they were looking at. Usually the "gut feeling" of the parents is right.
I really think you need to find another doctor - there are specialists in the world dealing with selective mutism/anxiety and I would definitely seek out someone with experience. At least your daughter is only three - time to find a correct diagnosis. By the way, how does the rest of your family feel about the "autistic diagnosis" - the one I feel that is very, very wrong? I wish you the best ....
My gut says anxiety. It was my only thought. I had no idea what selective mutism was. I looked at her and I just knew something awful was going on inside. Frankly I wanted to grab her and run out the door.
I was floored and shocked the first time they mentioned autism. It had never, not once, entered my mind. I know moms with autistic children and they always had a feeling something was up even if they were high functioning.
I learned about selective mutism by googling "not talking in preschool". I found a few stories of moms who also watched their kids at preschool and saw the same nearly exact behavior.
I have not seen a Dr yet for Sydney. The district is not allowed to dx my daughter. That didn't stop them from "testing" and coming for a reason for accepting her into their program.
My husband thinks they are wrong. He's very calm about it all. He keeps saying not to worry because it's obviously wrong. Worry is a mom's job and I'm doing a mighty fine job of it! My parents are the only other people who know what is going on. Both of them thought it was very odd. They see my daughter twice a week and she loves to go to their house and play. It's the only place I can leave her without a melt down.
I think I read that it is common for the kids to be stubborn at home. It's the only place they can state their will. She's become harder to reason with since preschool. Also her potty training has gone out the window. I was sending her to class in a pull-up because I wasn't sure she would be able to wait. Then I found out they don't always get a potty break if they don't ask!!! Boy was I mad!! She is/was cable of going when she needed before I sent her. Now we are nearly back to square one.
Thanks for all the time you have taken. It helps so much to bounce ideas off someone who has been there.
i see the selective mutism as well, but also wonder if prehaps there is something more. What concerns me slightly is the echolalia. That is often an indicator of something, and perhaps that is what the school district is seeing as well.
Selective mutism is becoming more and more recognized. If it is a public school district and not a private daycare, i suspect that they have dealt with it and have received some training in recognizing and creating modifications to help children with SM. we have several children with SM. the fact that they are aware of SM but are convinced it is not sm makes me suspect that there may be some other developmental issues- perhaps not autism but something. I suggest you go ahead and meet with the doctors and get the evaluations done. as you said, the district can't dx anyways- see what the doctors say. whatever the diagnosis- SM or something else, you will be able to get your daughter the help she needs. The good news is that it sounds like whatever it is is not severe... good luck!
She's become harder to reason with since preschool. - your comment
After our child started school, I felt that her anxiety so overtook her that we had "lost" the child that was inside. It was years before we began to see the re-emergence of the little girl we once knew. Also her high anxiety prevented her from learning - research says that if there is a decision between cognitive learning or emotional feeling in the brain, the emotional feeling will win every time. This is one reason why it is important to get help for your daughter at such a young age even though your daughter is not as severe in her anxiety as our child.
Also her potty training has gone out the window. - your comment
Yes, this happens all the time. I also expect you are having eating and sleeping issues. Our child was unable to use the washroom at school until her fourth year. She still has sleeping issues - now is 13 years old.
It's the only place I can leave her without a melt down. - your comment
Unfortunately, this is the "unspoken" part of anxiety. Your daughter is just trying to survive by protecting herself from what she perceives to be "an unsafe environment". Having said that the correct thing to do is to continue taking her to as many social events as possible (including grocery shopping, malls, McDonald's, church, playgrounds, etc), The way to overcome anxiety is to face it - again and again and again. That is why professional help is required - to find the best way to help your child learn how to manage her fears. Medication won't do it - although often many older children take meds to "take the edge off" so that the intervention and/or therapy can work, but the SSRI medications don't cure; they're only a crutch.
What concerns me slightly is the echolalia. - tiredbuthappy's comment
Actually this also bothered me slightly but you had a reason for this behaviour and it seemed reasonable (although I'm not aware of any of our sm children with this behaviour). My nephew spoke this way for over two years (he's the one with PDD-NOS) but that is the only method he used for speaking - nothing else. He was able to only "echo back". He was five years old before he could answer a question. By the way, my nephew did well in high school, completed college, married and now has a daughter. We're so proud of him.
So, I guess the same advice is still the prudent advice - you need a competent medical professional. But, I have no doubt that sm is the main issue here - Christmas is coming - enjoy your family and try not to worry too much.
As far as the echolalia goes she will repeat a question after me. I know if I ask her something like “do you need to go potty?” It’s mostly avoidance. Sometimes she just says the last word. Sometimes she will pick out an interesting new word and will use in a sentence later on. It's 10% of her speech at most.
She also repeats more commonly if she is stressed like at preschool or a situation she is uncomfortable with. She has bad separation anxiety. This is why I thought it might be linked to preschool anxiety. Once I get her in the car she cannot converse about school AT ALL. She will repeat any question about school. She will not answer! It's like she's still shut down by the experience. She does talk about other stuff..things we pass..hat she'll see daddy soon...ect
I have never heard her parrot something out of context. She does not repeat shows, radio, or over heard conversations.
My father is Norwegian and he uses some Norwegian words around her. She knows a few but they are only spoken in his presence. So she understands certain words have meaning to certain people and not to others.
She is not delayed.
She does not have sensory issues.
She spoke slightly later than most of her peers but not all. She was within the normal range though.
I did read that echolalia was normal; toddler development if it was not the majority of sceech but that it appears around 2 yrs not 3. She didn't do this at two.
what you are saying can be very true. i also worked with a child who exhibited echolalia some of the time and ended up being diagnosed on the spectrum. if it is anxiety, it is much more than separation anxieyt, please let the experts determine what her condition is- be it anxiety or other. I cannot even imagine your stress about all of this- i am not sure how I would handle it. best of luck and enjoy the holidays with your little one.