autism

[taylorjade.]

i havn't been on here in quite some time...but i'm back with some questions that hopefully someone can help me out with

my son is deaf, (he has bilateral CIs but they are not at a level yet that he is comfortable with so we're taking things slow with them) and i have just returned from seeing a pediatrician with Grandview Childrens Centre and she had said that she thinks he may have some level of autism.
she didn't really go into much detail because she said she wanted us to come back in 2 or 3 months and let her know if he has progressed with his walking abilities and social interactions. (he is cruising but not walking on his own, and has not said any words but has about 10 signs that he knows and uses)

she also said however that unfortunately there isn't anyone who specializes in children who are autistic and deaf, and she mentioned that some red flags for autism may simply be from him being deaf.
the speech part being one of them, as well as the eye contact (my son doesn't make eye contact often unless he really wants something), he throws very intense and violent tantrums (which i always assumed was because he can't communicate yet and is frustrated by it), he is very particular about his clothing..everything has to be right..socks have to be the same colour and he doesn't like to show his belly or his back and his pant legs and sleeves must be pulled down or he gets upset, and he lines up his cars in a very particular way, he is also a very picky eater.

now, i know nothing about autism, and so all of these things i just assumed were just things he did because he's two or because its just who he is or because he is deaf and not able to communicate well yet.

i know there wasn't really any questions in there but i was wondering if anyone had any knowledge about the subject that they could share with me, as the pediatrician says it is very tricky to diagnose autism in children who are deaf so i feel kind of stuck and confused.

 

[CSign]

How old is your child?
How long ago was he implanted?
How much signing exposure does he have? Does your family sign with him on a regular basis, and does his school (if he attends one) use sign language as well?

Having some of that information would paint a clearer picture. Of course most of us do not specialize in developmental disorders, but we might have some ideas.

I know a 6 year old child who was unilaterally implanted, doesn't wear the CI and also has Autism.

Regardless of anything, I'd say keep the signing going...

 

[CSign]

Woops, I missed that your son is 2 the first time I read it.
I would definitely recommend seeing a Developmental Specialist sooner than later. I think waiting 3 months would only have your son lose valuable time in his development. From some of the things you mention it sounds like it could be a possibility he may (possibly) fall somewhere on the spectrum.

You could even connect with your school district, and let them know this is a concern. At that point they should set up an evaluation for your son.

 

[AlleyCat]

We've had at least one other parent/poster, if not more, with similar scenarios. I cannot remember who they are. Can anybody remember? We could direct taylorjade to those threads if we can remember who those parents are.

 

[marcyp06]

It frusturates me SO much when "professionals" advise you to wait for answers. Trust your mommy instincts. Ive worked with autistic and behaviorally challenged kids for quite a few years and your son definatley has some key signs. Continue to talk to doctors and specialists until you find someone willing to help you find answers. Also start looking into your local deaf community and see if anyone has experience with autism. I live in a fairly small city and we have 2 deaf kids in our programs (one is 14 and one is 3).

 

[deafdyke]

he is very particular about his clothing..everything has to be right..socks have to be the same colour and he doesn't like to show his belly or his back and his pant legs and sleeves must be pulled down or he gets upset, and he lines up his cars in a very particular way, he is also a very picky eater.

On the other hand marcy, I do think it is very difficult to say " this is autism" vs. "this is due to being dhh" Unless, a kid manifests OBVIOUS severe symptoms of autism it can be very difficult to say which is which.
Although the car lining is a very very very classic quirk. Austine School for the Deaf in VT has a Dhh autism program: William Center at Austine
Quick question.....does he have anything else of note? Like was he born with anything else? It's very possible he may have PDD NOS (rather then classic autism) connected to a genetic syndrome or something.

 

[MCB]

I wouldn't worry about it that much. He may have problems adjusting to hearing through the CI's. People with autism spectrum disorders have difficulty adjusting to change. Best to adjust the CI's slowly. It will be a tough balancing act. I agree with the rest, he does have autistic characteristics.

You could look up "fragile X." Hearing loss is not associated with it, however.

 

[marcyp06]

On the other hand marcy, I do think it is very difficult to say " this is autism" vs. "this is due to being dhh" Unless, a kid manifests OBVIOUS severe symptoms of autism it can be very difficult to say which is which.
Although the car lining is a very very very classic quirk. Austine School for the Deaf in VT has a Dhh autism program: William Center at Austine
Quick question.....does he have anything else of note? Like was he born with anything else? It's very possible he may have PDD NOS (rather then classic autism) connected to a genetic syndrome or something.

I agree with that. And I shouldnt have just used the word "autism" on its own. All im saying it that some of the behaviors are common for a child on the spectrum as a whole. Though it could also be just a very particular toddler. In any case I do belive there should be follow up so that IF there is something going on services can be started sooner rather than later. Everyone on here will rally for a parent who thinks their child might have a hearing loss to get to the doctor and not stop until they have an answer and I believe it is the same in this situation. Make every effort possible to support the child (DD- of course im NOT suggesting that you are against that! Just explaining my view more in depth)

 

[CSign]

It is a bit disconcerting that the OP was told to wait a few months in my opinion. If I child has a suspected disability it should be assessed sooner than later so that their needs can be met.

This particular child I know was physically restrained in order to get him to put the CI on. It absolutely broke my heart. The teacher and parents did it. All I could say to them was that he was making a clear statement he didn't want to wear the CI. I recommended to the parents for him to have a Diagnostic Evaluation at the School for the Deaf, and thank God they said that they didn't recommend forcing him to wear the CI. After getting an MRI it was discovered that he had fluid behind his ear drums that may or may not have been causing discomfort. Today, he doesn't wear the CI and the parents have been going to sign language classes.

This is a different situation than what the OP is dealing with, but it's just some food for thought.

I hope that you will connect with the school district in writing, and let them know this suspected area of disability. You could also find a good Developmental Specialist, or connect with your local Diagnostic Center.

I just think it's better to have answers and give him everything he needs, rather than wondering what's going on and if his needs are being met.

Even if he does end up somewhere on the spectrum (which he may or may not), sign will still be a crucial part of his communication and language development.

 

[MCB]

This particular child I know was physically restrained in order to get him to put the CI on. It absolutely broke my heart. The teacher and parents did it. All I could say to them was that he was making a clear statement he didn't want to wear the CI

Children on the autism spectrum, especially high-functioning ones, must never be forced to do or participate in anything. The trick is to get their interest and cooperation. Forcing them to do anything damages the already fragile relationships with people.

That kind of -- child abuse-- was a factor with my divorce. My son is high-functioning, and has some autistic traits. He also had severe ear infections as a little guy.

 

[CSign]

Children on the autism spectrum, especially high-functioning ones, must never be forced to do or participate in anything. The trick is to get their interest and cooperation. Forcing them to do anything damages the already fragile relationships with people.

That kind of -- child abuse-- was a factor with my divorce. My son is high-functioning, and has some autistic traits. He also had severe ear infections as a little guy.

I couldn't agree more...
It was probably one of the most horrific things I've witnessed in my life.

 

[taylorjade.]

okay so i'm going to try to respond to everyone's posts in one reply instead of replying individually so i apologize in advance if i miss anything.

to CSign:
my son just turned two this february and was implanted this past august. he has had some exposure to sign, as a teacher from the school for the deaf in our region meets with us at our home every week, i however am just learning sign so although i'm doing my best to expose him to as much sign as possible when his teacher is not around it is a fairly slow process, he is a very quick learner though and he knows at least 10 basic signs, some of which he can mimick and use and some he can't use but he recognizes what it means.
in regards to him being evaluated, the pediatrician has said she will try to evaluate him in a few months however she said it will be difficult due to his age and the fact that he is deaf.

to marcyp06:
well to be honest my mommy instincts are telling me they could be wrong, in my own opinion i don't think he is autistic, however having said that, i don't have any knowledge about autism and have never had any exposure to anyone with any level of autism, i do recognize though that he has some of the things mentioned on the 'red flag' list for autism. my father works with kids that are autistic, however none of them are deaf and so he can only tell me so much, they are also quite a bit older than my son.

to deafdyke:
in the opinion of my father (who works with autistic children) as well as the pediatrician they do not think he has any obvious symptoms of severe autism.
he has had genetic testing and he has one copy of a gene that causes pendred syndrome, however according to his surgeon, only having one copy of the gene should not have caused him to have any hearing loss, especially not profound hearing loss (pendred syndrome from what i've read causes progressive hearing loss as well as affects the thyroid etc) so he had said that he suspects he has another gene that may be affecting him, however they don't know what it is yet so they can't test for it.
other than that he has not been diagnosed with anything.

to marcyp06:
the pediatrician gave me some contact numbers for programs that are for autistic children however she has said the waiting list can be as long as 3 years!!

 

[taylorjade.]

i also want to mention that this pediatrician has only met with him once for half an hour and so i don't feel that she has seen his behaviour enough to really get a feel for who he is.
one of the things she mentioned and stressed about was the eye contact, which he doesn't do a lot however he can, and will when he wants something, or if someone is making a funny face (he loves when people make their lips vibrate) he will watch and then do it back,

i honestly think that he doesn't feel any need to look at your face as he isn't hearing any words coming out of your mouth, he will watch for my hands when i do any signs, and he will look for my facial expressions to see if i'm upset with him for doing something or happy with him for doing something, (when i make a mad face he will cross the whole room just to come give me a kiss lol), he just doesn't look at me while i'm speaking..which i think is understandable since he can't hear me when he's not wearing his CIs and he hasn't had enough exposure to the CIs to understand where the sound is coming from anyway.. so i'm a little confused as the pediatrician seemed so stuck on his eye contact however i think he is very responsive otherwise..

 

[Bottesini]

Interesting about how he will kiss you if you look mad.

I have had an autism diagnosis since I was about 2 , and if you look at me with a mad face, I just get mad as I wonder why you are mad.

 

[MCB]

Hearies tend to get really stuck on eye contact. I wouldn't worry about that much, either. Just looking at the person, other than the eyes wouldn't be unusual, and that is what your post says. However, if he obviously averts his gaze to not look at people, that could be a significant indication.

because its just who he is

Always keep this in mind. Labels can get in the way. My son is just "quirky."

 

[deafdyke]

Well you know.........if your father and the pediatrican don't think he has severe/obvious autism that is good! Also, the fact that he comes and gives you a kiss when you're mad..that's actually not autism....Autistic people cannot read facial expressions.
He might be slightly Aspie(which is the "learning disabilty"/ "lite" version of autism) or LD or whatever.
I do think that a lot of docs seem to get stuck on spoken language delay as an all purpose red flag for autism. Not quite. Learning disabilties can cause spoken language delays for example. A lot of conditions can cause spoken language delays.

 

[Bottesini]

Well you know.........if your father and the pediatrican don't think he has severe/obvious autism that is good! Also, the fact that he comes and gives you a kiss when you're mad..that's actually not autism....Autistic people cannot read facial expressions.
He might be slightly Aspie(which is the "learning disabilty"/ "lite" version of autism) or LD or whatever.
I do think that a lot of docs seem to get stuck on spoken language delay as an all purpose red flag for autism. Not quite. Learning disabilties can cause spoken language delays for example. A lot of conditions can cause spoken language delays.

Not too much disagreement, but I can recognize happy, sad, and angry faces. Others do just look like making faces, but it isn't true that autistic people can't recognize facial expression.

 

[natty_4ever]

Before my nephew could talk (he's hearing and just a little behind), he would do typical "autistic" things. For example, he would flap his hands when he got angry, line up his cars, be really particular about his toys, and eat only certain things.

Now, months later, my nephew can communicate better. His speech isn't perfect, but he can definitely let everyone know what he wants (cookie, juice, goodnight, please, etc.) His hand flapping has stopped, his temper tantrums have stopped, and all of those things. He likes to be hugged and kissed and such unless he's busy coloring or something. Basically, he's not autistic, he's just sort of OCD about his stuff. My sister and I live with him and he's used to seeing us neat freaks be really particular about our things, so it doesn't really surprise me. Perhaps your son is just a neat freak too.

From my experience with my nephew, the problem was not being able to communicate. Obviously, I'm not a doctor and can't tell you exactly what the issue is (if there is one), but I'm just letting you know what I've seen.

 

[deafdyke]

Not too much disagreement, but I can recognize happy, sad, and angry faces. Others do just look like making faces, but it isn't true that autistic people can't recognize facial expression.

Yes, but you're more on the mild end of the spectrum right? You can reconize the basics but you can't reconize more sophsicated facial expression....and you prolly can't speechread too well right? It just goes to reconize that autism is a spectrum. Some mild autistic people can reconize happy, sad and angry faces....others cannot.

 

[dogmom]

I've worked with people with severe and profound autism and people who fall on various levels on the spectrum who have other labels and one thing I learned was how much I don't know - and how much generally isn't known about the brain and about what is labeled as "autism" or "Aspberger"

Dr. Temple Grandin has much discussion on it though. I'm excited to see her here in May!

taylorjade, best wishes for your family - remember, in the end, <my perspective> what is even more important than the label, is what you and your child DO with that label.