Hello, all. I have a question that I would like some help with. My 16 month old girl has neither expressive nor receptive speech as yet. She also does not play as such, but rather opens and shuts things repeatedly or fills buckets and dumps them repeatedly. She does not seem to like others very much, preferring to sit by herself and pull up grass rather than play with other children out doors. The doctor said that if she was not as affectionate with me as she is he would send her to be checked for autism. Is it true that autistic children are not affectionate with anyone? Also, does her behaviour sound familiar to any one? Thank you very much. ~ Barbara
My 16 month old
- Thread starter quietplz
- Start date
BusynMember
Well-Known Member
It sounds like a form of autism to me. It's NOT true that all autistic kids aren't affectionate toward their parents. Her behavior is worrisome--I'd definitely take her to see a developmental pediatrician so she can start interventions and improve. The earlier there is help, the better.
SRL
Active Member
Hi Barbara. Welcome to our forum.
In the year 2000 the American Acadamy of Neurology published a study which showed that around 50% of the time when parents expressed concerns like you just did to your doctors, the doctors passed it off when it was indeed Autism. One big mistake that the doctors made was not recognizing that there is a lot of variation to kids with Autistic Spectrum Disorders so they would decide not to refer based on what they recognized as classic Autism. In real life, children vary: some are more affectionate, some more verbal, some more social but still meet the diagnostic criteria.
Here's the study:
http://www.aan.com/professionals/practice/pdfs/gl0063.pdf
Given your description, if I were in your shoes I would want a full evaluation on her: audiology, speech/language, occupational therapy, and a specialist such as a developmental pediatrician to take a look. If my pediatrician wouldn't listen to me, I'd be looking for another pediatrician. because I think it's important that they listen to parent's instinct.
Is she lining up toys or other objects into straight lines or formations?
I should mention that of course none of us really know what's going on with your little girl, as we are parents and not professionals.
In the year 2000 the American Acadamy of Neurology published a study which showed that around 50% of the time when parents expressed concerns like you just did to your doctors, the doctors passed it off when it was indeed Autism. One big mistake that the doctors made was not recognizing that there is a lot of variation to kids with Autistic Spectrum Disorders so they would decide not to refer based on what they recognized as classic Autism. In real life, children vary: some are more affectionate, some more verbal, some more social but still meet the diagnostic criteria.
Here's the study:
http://www.aan.com/professionals/practice/pdfs/gl0063.pdf
Given your description, if I were in your shoes I would want a full evaluation on her: audiology, speech/language, occupational therapy, and a specialist such as a developmental pediatrician to take a look. If my pediatrician wouldn't listen to me, I'd be looking for another pediatrician. because I think it's important that they listen to parent's instinct.
Is she lining up toys or other objects into straight lines or formations?
I should mention that of course none of us really know what's going on with your little girl, as we are parents and not professionals.
Thank you for your replies and welcome. I have a few more questions if you would not mind.
We are getting referrals for a hearing screen and a speech evaluation, but what is a developmental pediatrician as opposed to a regular one?
We may be getting an evaluation from an occupational therapist as well. She still has a tongue thrust when she eats and chokes and coughs frequently. The doctor said if the speech person couldn't help her with it, then she would have to see the occupational therapist. She also walks funny in my opinion, would this type of therapist help with that? Who would help her respond to social cues from other people besides me?
She does not line things up in play. She does not play with individual items except to put them into something else and then dump out.
My spouse feels that since the doctor is not concerned that we should not be and that she will just do things on her own time frame. Is there any way to prove once and for all that a child is different in a certain way, as opposed to guessing based on a checklist?
Thank you for your help. I always knew that my eldest was different, but it feels funny to worried more about the little one.
We are getting referrals for a hearing screen and a speech evaluation, but what is a developmental pediatrician as opposed to a regular one?
We may be getting an evaluation from an occupational therapist as well. She still has a tongue thrust when she eats and chokes and coughs frequently. The doctor said if the speech person couldn't help her with it, then she would have to see the occupational therapist. She also walks funny in my opinion, would this type of therapist help with that? Who would help her respond to social cues from other people besides me?
She does not line things up in play. She does not play with individual items except to put them into something else and then dump out.
My spouse feels that since the doctor is not concerned that we should not be and that she will just do things on her own time frame. Is there any way to prove once and for all that a child is different in a certain way, as opposed to guessing based on a checklist?
Thank you for your help. I always knew that my eldest was different, but it feels funny to worried more about the little one.
SRL
Active Member
A developmental pediatrician (actually the specialty area is called Developmental & Behavioral Pediatrics) has extra training and clinical experience in diagnosing and treating various developmental issues. Typically what would happen is that you would see your own pediatrician who would refer you to a developmental pediatrician and then the develpmental pediatrician would refer out to Occupational Therapist (OT), PT, speech, etc. unless any of those have already been done prior to the appointment.
Here's a link about getting a referral. If your pediatrician isn't convinced you will need to push the issue. (My doctor listened to my concerns the first time and if he hadn't, he would have become our former doctor.)
http://www.oreilly.com/medical/autism/news/getting_diag.html
You may want to check in with the nearest Autism Society of America chapter. Parents there can tell you who in the area is best at diagnosing or ruling out Autistic Spectrum Disorders. Sometimes that is a developmental pediatrician but there may be other options in your region such as an Autism Clinic. Here's a link:
http://www.autism-society.org/
A physical therapist would probably be the specialty area to deal with any gait issues. Speech/language pathologists deal with all aspects of language, including appropriate social speech.
About the husband...sigh...most of us could write a book on this. Men and grandparents often are really reluctant to even entertain the thought that there might be something amiss with their progeny (I call it Gene Pool Pride ;-)). Of course it's hard on us moms too but we often get over the hurdles faster and recognize the fact that the earlier we face up to the possibility, the faster we can get the child help if help is needed. Our rule of thumb around here is that if mom suspects there is a problem, trust your gut and get it checked out by a reputable professional.
Sometimes there are definitive ways to diagnose, such as with genetic testing for issues like Fragile X. More often with issues like Autism Spectrum Disorders (ASD)'s diagnosis is made based on a combination of parent interview, developmental history, observation and checklist.
Here's a link about getting a referral. If your pediatrician isn't convinced you will need to push the issue. (My doctor listened to my concerns the first time and if he hadn't, he would have become our former doctor.)
http://www.oreilly.com/medical/autism/news/getting_diag.html
You may want to check in with the nearest Autism Society of America chapter. Parents there can tell you who in the area is best at diagnosing or ruling out Autistic Spectrum Disorders. Sometimes that is a developmental pediatrician but there may be other options in your region such as an Autism Clinic. Here's a link:
http://www.autism-society.org/
A physical therapist would probably be the specialty area to deal with any gait issues. Speech/language pathologists deal with all aspects of language, including appropriate social speech.
About the husband...sigh...most of us could write a book on this. Men and grandparents often are really reluctant to even entertain the thought that there might be something amiss with their progeny (I call it Gene Pool Pride ;-)). Of course it's hard on us moms too but we often get over the hurdles faster and recognize the fact that the earlier we face up to the possibility, the faster we can get the child help if help is needed. Our rule of thumb around here is that if mom suspects there is a problem, trust your gut and get it checked out by a reputable professional.
Sometimes there are definitive ways to diagnose, such as with genetic testing for issues like Fragile X. More often with issues like Autism Spectrum Disorders (ASD)'s diagnosis is made based on a combination of parent interview, developmental history, observation and checklist.
A bit of an update and more questions, if that is ok.
My 16 month old is now almost 19 months. We have had a hearing screen with an audiologist, a feeding evaluation with occupational therapists, and a speech evaluation with speech therapists.
We were told that she hears perfectly, has low tone in her mouth and face, has mild oral hypersensitivity, does not understand speech or communication aside from very obvious gestures, and has no meaningful expressive language. The people at the feeding clinic also said that she has obviously low tone in the rest of her body and is double jointed in most joints, but that it is not their place to give recommendations in regards to that since it is not their specialty.
She has been placed in speech therapy twice a week. We have exercises to do with her facial muscles and instructions on how to rub the inside of her mouth with a brush and rub her face with a vibrating toy.
Yet no one seems to know or be concerned about why she doesn't talk or understand words. What manner of doctor or therapist do we have to see to figure out the why of all this? Also if any one has any other helps or insight, I would love to listen. Thank you.
My 16 month old is now almost 19 months. We have had a hearing screen with an audiologist, a feeding evaluation with occupational therapists, and a speech evaluation with speech therapists.
We were told that she hears perfectly, has low tone in her mouth and face, has mild oral hypersensitivity, does not understand speech or communication aside from very obvious gestures, and has no meaningful expressive language. The people at the feeding clinic also said that she has obviously low tone in the rest of her body and is double jointed in most joints, but that it is not their place to give recommendations in regards to that since it is not their specialty.
She has been placed in speech therapy twice a week. We have exercises to do with her facial muscles and instructions on how to rub the inside of her mouth with a brush and rub her face with a vibrating toy.
Yet no one seems to know or be concerned about why she doesn't talk or understand words. What manner of doctor or therapist do we have to see to figure out the why of all this? Also if any one has any other helps or insight, I would love to listen. Thank you.
SRL
Active Member
Thanks for the update--so often we don't hear back once families are on their way!
At 19 months I would suggest a behavioral and developmental pediatrician, or perhaps an Autism Clinic if there is one in your region. Often you'll need a pediatrician referal but sometimes you can get appointments on your own.
The low muscle tone falls under the area of physical therapy and should be addressed as well.
At 19 months I would suggest a behavioral and developmental pediatrician, or perhaps an Autism Clinic if there is one in your region. Often you'll need a pediatrician referal but sometimes you can get appointments on your own.
The low muscle tone falls under the area of physical therapy and should be addressed as well.
BusynMember
Well-Known Member
Low muscle tone is common with autistic spectrum disorder (which doctors may be loathe to diagnose so young, but the younger you get help the better). I would get her into interventions ASAP. Does she make eye contact with strangers? Does she mimic anyone? Does she, say, wave bye bye?
I'm just a mom with a spectrum kid, but it sure sounds like an autism spectrum problem to me. Good luck, whatever you decide to do.
I'm just a mom with a spectrum kid, but it sure sounds like an autism spectrum problem to me. Good luck, whatever you decide to do.
Just wanted to second (or third) the opinion that you should start interventions as soon as possible. Are you in the US or elsewhere? A Special Education preschool can be very helpful with young children. Both of my kids have attended a school that mainstreams kids with special needs (difficult child to receive sp ed services; easy child goes there because it is such an amazing place).
Good luck and please keep us updated.
Good luck and please keep us updated.
Once again thank every one for their responses. We have been so busy lately that it is crazy.
SRL, we have an upcoming evaluation with a physical therapist for her funny walking and muscle tone. Her doctor is also having her evaluated by a psychologist, although I don't really understand why. Something about making sure that her brain is hearing what her ears are? My elder girl is seeing a developmental and behavioral pediatrician, I will see if he will check out the baby too. He is the one who originally told us to have the baby's doctor check into all my concerns because they were valid.
Midwest Mom, she does make eye contact with others. She does not like to interact with them, though. She will mimic only through much repetition. We have with much difficulty taught her a few signs that she uses, but will not wave bye bye unless her hand is first waved by someone else and even that is only once in a while. She has no words or even sounds that she uses in an intentional fashion.
tictoc, we are located in NC, in the US. What other interventions might we look into? I feel so lost, all my elder girl's needs are almost diametrically opposite!
Thank you all for your wishes of luck and support.
SRL, we have an upcoming evaluation with a physical therapist for her funny walking and muscle tone. Her doctor is also having her evaluated by a psychologist, although I don't really understand why. Something about making sure that her brain is hearing what her ears are? My elder girl is seeing a developmental and behavioral pediatrician, I will see if he will check out the baby too. He is the one who originally told us to have the baby's doctor check into all my concerns because they were valid.
Midwest Mom, she does make eye contact with others. She does not like to interact with them, though. She will mimic only through much repetition. We have with much difficulty taught her a few signs that she uses, but will not wave bye bye unless her hand is first waved by someone else and even that is only once in a while. She has no words or even sounds that she uses in an intentional fashion.
tictoc, we are located in NC, in the US. What other interventions might we look into? I feel so lost, all my elder girl's needs are almost diametrically opposite!
Thank you all for your wishes of luck and support.
Hound dog
Nana's are Beautiful
My son Travis is autistic. He has always been very affectionate. That never even factored in while he was being diagnosed because other symptoms and behaviors were quite obvious. There was no doubt. All you've got to do is sit with him for about 15 mins. lol
And it was that way when he was your daughter's age. I was familiar with autism in the severe form. Back then it wasn't a spectrum disorder.......and no one had as yet realized there were varying degrees. I used to tell his pediatrician docs that the boy acted autistic........yet it didn't make sense cuz I knew he wasn't severe enough to actually get a diagnosis of it at that time. We've come a long way in more than 20 yrs.
Good luck on getting her evaled. Don't be surprised if they want to wait a while before actually giving her the diagnosis if she has it. 16 months is awfully young to be diagnosed with it.
((hugs))
And it was that way when he was your daughter's age. I was familiar with autism in the severe form. Back then it wasn't a spectrum disorder.......and no one had as yet realized there were varying degrees. I used to tell his pediatrician docs that the boy acted autistic........yet it didn't make sense cuz I knew he wasn't severe enough to actually get a diagnosis of it at that time. We've come a long way in more than 20 yrs.
Good luck on getting her evaled. Don't be surprised if they want to wait a while before actually giving her the diagnosis if she has it. 16 months is awfully young to be diagnosed with it.
((hugs))
Well we have had the baby's evaluations. She is now 19 months old. They are not sure whether she is just very developmentally delayed or is on the spectrum. They say she is more desirous of social contact than autistic children usually are, but that she has a lot of behaviors which are red flags. She will be having play therapy twice a week for an hour each and will continue with speech twice a week for an hour each.
They will not have her in physical therapy. She scores very high on her gross motor skills because she jumps with both feet, goes backwards, and runs, even though she falls so much. They said that low tone is why she falls, but since she has all the right skills they are not going to do anything with her about it.
Has any one any experience with play therapy? I'd not really heard of it before.
I was discussing this all with a friend. She said that I ought not to let her twirl things before her face or spin like she does, to teach her that it is not socially acceptable. Is this so?
The evaluators said she may be on the spectrum but not autistic. What does that mean, exactly?
They will not have her in physical therapy. She scores very high on her gross motor skills because she jumps with both feet, goes backwards, and runs, even though she falls so much. They said that low tone is why she falls, but since she has all the right skills they are not going to do anything with her about it.
Has any one any experience with play therapy? I'd not really heard of it before.
I was discussing this all with a friend. She said that I ought not to let her twirl things before her face or spin like she does, to teach her that it is not socially acceptable. Is this so?
The evaluators said she may be on the spectrum but not autistic. What does that mean, exactly?
JJJ
Active Member
As the mother of two autistic children and a former teacher of children with severe autism, I 100% disagree with your friend. Your daughter is meeting a neurological need by stimming (twirling things, spinning, etc). And time you "stop" one stimming behavior, another one will take its place as she will find a way to meet her needs. Her current ones are not dangerous, I would let them go for now. (If she starts head banging or biting herself, then I would work to replace those with less dangerous stims.)
Play therapy can be done for different reasons. I would think that in your daughter's case it will be done to teach her how to play, especially with others.
GoingNorth
Crazy Cat Lady
The hand motions or spinning are what are called 'stims'. Us folks on the spectrum sometimes have trouble getting ourselves centered on our bodies especially after having been stressed (that can include fun stress).
I am 49 years old and on the spectrum myself. I STILL have stims. I've learned how to control the left hand waving by sticking it behind my back and wriggling it where the chair back hides it.
My weird foot stimulant where I cross my ankles and feet and rub them together isn't gone, but I can mostly keep that under control when out and around, On my own? Full speed ahead.
It's my house and my feet and I can do weird things with my feet if I want to!
Stims can be thought of as a repetitive self-soothing behavior.
I am 49 years old and on the spectrum myself. I STILL have stims. I've learned how to control the left hand waving by sticking it behind my back and wriggling it where the chair back hides it.
My weird foot stimulant where I cross my ankles and feet and rub them together isn't gone, but I can mostly keep that under control when out and around, On my own? Full speed ahead.
It's my house and my feet and I can do weird things with my feet if I want to!
Stims can be thought of as a repetitive self-soothing behavior.
My son has Aspergers.
The difficulty with diagnosis was explained to me: toddlers do wierd things all the TIME! Where do you draw the line between playing and a symptom?
Instead they addressed DS weaknesses as they came up until, yes, he WAS diagnosed with what I always suspected he had. Aspergers.
Don't stop her from spinning. Emotional tension and anxiety is a biggie with these kids, and the spinning helps them to "Center themselves", in the words of a therapist, and therefor keep control of themselves.
Besides, spinning is socially acceptable in a toddler, and I have noticed in my son that such behavior became much less common as he grew up.
He is 15 now, and he only holds a plastic sword perhaps one day a week, and that only at home. And, like a previous poster stated, if he wants to hold a plastic sword inside his own home, it *IS* his home! He no longer rubs his stomach with it, but he does hold it. And, nobody at home really cares if he does hold it.
The difficulty with diagnosis was explained to me: toddlers do wierd things all the TIME! Where do you draw the line between playing and a symptom?
Instead they addressed DS weaknesses as they came up until, yes, he WAS diagnosed with what I always suspected he had. Aspergers.
Don't stop her from spinning. Emotional tension and anxiety is a biggie with these kids, and the spinning helps them to "Center themselves", in the words of a therapist, and therefor keep control of themselves.
Besides, spinning is socially acceptable in a toddler, and I have noticed in my son that such behavior became much less common as he grew up.
He is 15 now, and he only holds a plastic sword perhaps one day a week, and that only at home. And, like a previous poster stated, if he wants to hold a plastic sword inside his own home, it *IS* his home! He no longer rubs his stomach with it, but he does hold it. And, nobody at home really cares if he does hold it.
GoingNorth
Crazy Cat Lady
What is funny is that specific stims can be inherited. The foot stimulant runs through three generations of my maternal family and all of us are on the spectrum.
trinityroyal
Well-Known Member
I agree with what GoingNorth and JJJ said about stimming. Suppressing stims is VERY difficult, and they will just manifest in another way.
Like GoingNorth, I am on the spectrum too and in my forties, and I still stimulant all the time. I've learned to mask it so that it's not as obvious, but if you know what to look for you can spot them right away.
I would make the same comment about eye contact if it ever comes up. I know that direct eye contact is painful for me. It physically hurts because there is SO MUCH input coming in from the other person's eyes that it hurts my brain. I've learned some techniques to make it look like I'm making eye contact, but I rarely actually do so.
Another thing I wanted to comment on...you mention that the doctor suggests your daughter seeks more social interaction than is typical of people with autism. I think this is a common mistake. People with autism can be very social. The difficulty often arises not because of wanting to be solitary, but rather in not understanding the social conventions of HOW to be social with others.
At your daughter's age it might be hard to get a conclusive diagnosis, but in the meantime providing interventions for the specific issues that do come up, e.g. sensory, gross and fine motor coordination, etc. seems to be a good approach.
Like GoingNorth, I am on the spectrum too and in my forties, and I still stimulant all the time. I've learned to mask it so that it's not as obvious, but if you know what to look for you can spot them right away.
I would make the same comment about eye contact if it ever comes up. I know that direct eye contact is painful for me. It physically hurts because there is SO MUCH input coming in from the other person's eyes that it hurts my brain. I've learned some techniques to make it look like I'm making eye contact, but I rarely actually do so.
Another thing I wanted to comment on...you mention that the doctor suggests your daughter seeks more social interaction than is typical of people with autism. I think this is a common mistake. People with autism can be very social. The difficulty often arises not because of wanting to be solitary, but rather in not understanding the social conventions of HOW to be social with others.
At your daughter's age it might be hard to get a conclusive diagnosis, but in the meantime providing interventions for the specific issues that do come up, e.g. sensory, gross and fine motor coordination, etc. seems to be a good approach.
GoingNorth
Crazy Cat Lady
Trinity, interesting. You have the same sort of eye contact problems that I do. I have great difficulty trying to make eye contact, interpret all the body language, AND follow and respond to speech.
I've learned to fake it for the most part, but the problem is that NT people learn all this as part of normal brain development. Those of us on the spectrum very often have to work like crazy to do this.
I've learned to fake it for the most part, but the problem is that NT people learn all this as part of normal brain development. Those of us on the spectrum very often have to work like crazy to do this.
The baby is 20.5 months now and I have a few more questions please.
She has been having speech and play therapy twice a week each, an hour a session. In some ways it has helped a lot. She has a bigger receptive vocabulary than she used and has many signs even though she mostly "talks" only to herself. She even has a sound she uses like a word!
On the other hand she has been acting more obviously different. She has to hold things in her hands all the time, like crayons or spoons, or she has a fit. She does odd things like dragging her finger nails on the walls for a long time, biting the tips of her fingers, being obsessed by animals whether they be toys, pictures or alive. Still won't actually interact, but rather uses people as tools to accomplish what she wants. Has a need to be held tightly to be comforted.
The therapists say she might have sensory differences, but won't explain beyond that. What is a sensory difference?
Why would the therapy, which seems to be helping her, make her act so funny? Thank you for any help, I am just so confused.
She has been having speech and play therapy twice a week each, an hour a session. In some ways it has helped a lot. She has a bigger receptive vocabulary than she used and has many signs even though she mostly "talks" only to herself. She even has a sound she uses like a word!
On the other hand she has been acting more obviously different. She has to hold things in her hands all the time, like crayons or spoons, or she has a fit. She does odd things like dragging her finger nails on the walls for a long time, biting the tips of her fingers, being obsessed by animals whether they be toys, pictures or alive. Still won't actually interact, but rather uses people as tools to accomplish what she wants. Has a need to be held tightly to be comforted.
The therapists say she might have sensory differences, but won't explain beyond that. What is a sensory difference?
Why would the therapy, which seems to be helping her, make her act so funny? Thank you for any help, I am just so confused.
SRL
Active Member
Thanks for the update. So glad to hear the progress on the speech front!
What the therapist is referring to is Sensory Integration Dysfuntion, also called Sensory Processing Disorder.
https://web.archive.org/web/20100820130047/http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm
If this article below rings a bell at all then check out the book "The Out of Sync Child" by Carol Kranowitz.
Therapists widely vary on how much they'll speak up about additional possible diagnoses. Some will come right out and tell you what they suspect, others will hint, and some won't say a peep. If it's a school or county staff member, they often will hint because if the school raises a concern, then they may be liable for testing and therapy. Some will be instructed not to speak outside of their field of expertise.
Has the developmental pediatrician done an evaluation on her? Speech and sensory and unusual play behaviors are red flags of Autistic Spectrum Disorders so I'd want to get as much in the way of evaluation and appropriate therapy. Good for you for catching these issues early.
If you haven't, I'd make sure to get some video of her unusual behaviors and keep that in your file with her medical info.
What the therapist is referring to is Sensory Integration Dysfuntion, also called Sensory Processing Disorder.
https://web.archive.org/web/20100820130047/http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm
If this article below rings a bell at all then check out the book "The Out of Sync Child" by Carol Kranowitz.
Therapists widely vary on how much they'll speak up about additional possible diagnoses. Some will come right out and tell you what they suspect, others will hint, and some won't say a peep. If it's a school or county staff member, they often will hint because if the school raises a concern, then they may be liable for testing and therapy. Some will be instructed not to speak outside of their field of expertise.
Has the developmental pediatrician done an evaluation on her? Speech and sensory and unusual play behaviors are red flags of Autistic Spectrum Disorders so I'd want to get as much in the way of evaluation and appropriate therapy. Good for you for catching these issues early.
If you haven't, I'd make sure to get some video of her unusual behaviors and keep that in your file with her medical info.
