Coming out of denial --> Autism?

[Southern_Belle]

My DD is currently 18 months old. She's a happy, silly little girl who loves to play, smile and laugh. But she has a pretty hefty speech delay. She only says 'Dada' and 'Bye-Bye' consistently, and usually not in context. She has recently started repeating syllables (ba, la, ga, fa) but will babble on her own very sparingly.

She doesn't like men other than her father. I mean a total aversion. She can be playing happily, but if any male enters the room - doesn't matter if it's a family member to whom she has had exposure - she runs to clutch me or her father. She screams bloody murder if her grandfather comes anywhere near her.

She doesn't point to anything. She will make gestures for her wants, or reach for her cup/blanket/to be picked up. She does not seem to comprehend "where is mama?" or "where is daddy?". She will inconsistently respond to her name. Sometimes you turns to look at who is calling her. Other times, it's like nothing is being said.

She does not stack blocks and does not typically "imitate" others in play. For example, if you push a car around and then say "your turn" she picks up the car and puts it in her mouth.

She loves to shake her head back and forth (as if saying no) but it is definitely not "no" to her as she is smiling, as if playing in her own little world. She does not shake or nod her head.

I could go on and on. I finally had her evaluated, and she qualified for early intervention for a speech therapist (for the speech delay) and a special instructor (as her social/play skills are also delayed). I have an appointment with her pediatrician next week for her 18 month check up, but I do feel like her ped is quick to say "don't worry about it" but my gut is telling me something different.

I know that its early at 18 months, but is there anyone out there with a child on the spectrum that can remember what was going on at 18 months? I just want to be able to provide as much support, care, love and nurturing for my child. I am definitely moving forward with the EI, but I guess I just don't want to "wait" and get a diagnosis at 3, when I feel like I could be doing something now. Is EI just the way to go at the moment?

Sorry this is so long.

[Linda on the move]

Originally Posted by Southern_Belle

I know that its early at 18 months, but is there anyone out there with a child on the spectrum that can remember what was going on at 18 months? I just want to be able to provide as much support, care, love and nurturing for my child. I am definitely moving forward with the EI, but I guess I just don't want to "wait" and get a diagnosis at 3, when I feel like I could be doing something now. Is EI just the way to go at the moment?

My DD is 13 years old with a dx of PDD-NOS. She is definently on the spectrum. Even at age 3, she couldn't be dx'ed. At that time, they could only say "autism like behavoirs" but it wasn't clear enough to say "autism spectrum disorder."

At 18 months, she seemed a little quirky or a bit of a late bloomer.

For the most part, a dx isn't a magic pill that suddenly makes everything clear. What is it that you feel like you *could* be doing now if you had one? My DD's dx makes it easier for the school to make accomodations for her and helps me communicate with professionals about what is going on with her, but it doesn't really help me with parenting her. I wish it did.

Has your DD had a complete hearing check with a good audiologist?

[Southern_Belle]

We have a line up of ped, Audiologist, and ENT over the next two weeks.

I don't know. Maybe it's all in my head. Maybe having a dx will make me feel better - and allow me to align myself with others that have similar experiences. All my friends have toddlers that hit milestones on time/early and just can't relate to my worry/frustration with having an 18 month old that cannot identify mommy and daddy, or respond consistently to her name, etc.

I also think that hearing from others that have been here or can remember what they did at this stage would be beneficial. We were approved for EI, but I just want to make sure I am doing all I can.

[Linda on the move]

Originally Posted by Southern_Belle

We have a line up of ped, Audiologist, and ENT over the next two weeks. ...
We were approved for EI, but I just want to make sure I am doing all I can.

I think you are doing the right things.

How is your DD doing on gross motor milestones? They were off for my DD. going to the park, playing on ride-on toys, going down slides, swinging, playing in water are all super good things.

[sbgrace]

That's a lot of autism flags. I'd be looking into autism specific stuff (like floortime for example) at this point. That is what I did with my son when he had autism signs (late to point, very late to shake head, inconsistent responding to his name, etc.) but was too young to be evaluated in our area.

Are you feeling ok about the possibility?

[APToddlerMama]

My son is 24 months old, and I could have written that verbatim when he was 18 months old with a few minor differences.

We are still in the "we don't know" phase with our son since he's still so little, BUT, I am starting to feel better and more hopeful as just within the past few weeks he has really made some huge strides.

I worked in EI prior to having my son, so, like you, was not content to "wait and see" and have had to push his pediatrician on stuff. He will have an eval for an ASD in a few months as we're on a waiting list. Anyhow, my suggestion would be to start looking into any and all "treatments" or suggestions for things that have helped kids with autism now. We have basically gone down the list trying things and while some of it might be totally unnecessary and it might turn out that your daughter and our son are just "late bloomers", I think it is worth a try. My husband and I agreed that while all of this stuff is a pain, we would much rather inconvenience ourselves now than ask ourselves "what if?" when he's 10. One of the first things we did was the GFCF diet and I noticed huge changes having casein out of his diet. I haven't seen as big of changes with gluten free, but that can take much longer to notice changes. The most recent huge change was pulling sunflower oil out of his diet. I have no clue why it was such a problem because I haven't seen it listed ANYwhere as being an issue, but he has had some major improvements since we quit. Around the same time we also started fish oil, which many people swear by for speech delays. I honestly am not sure if it is more the fish oil or having sunflower oil out that are causing the changes, but I think it is probably both. We are also loosely following the diet from the "Feast Without Yeast" book, and again, I'm more unsure about that, just like gluten free, but I figure it is worth doing at least until his language is closer to being developmentally on track.

There is a checklist somewhere that maybe someone can link that has a list of all the things that parents of children with ASD have tried and what percentage found it helpful. It gives you a lot of good ideas of where to start. Looking at diet, making changes, adding supplements, etc. has been a pain, but my son is starting to look less and less like he has an autism spectrum disorder to me, so I am happy to keep doing these things.

I wish you luck with all of this. I know it is an incredibly stressful time... It sounds like you are really on track though and on top of things. Many parents have no clue anything is "off" until soooo much later.

[Southern_Belle]

I have gone back and forth between peaks of strength (researching, trying to figure out options, support, etc.) and valleys of pure sobbing over the last few days. I think it's less the diagnosis (or lack thereof) that is eating at me and more a feeling of helplessness and not knowing what I can do for my DD. I just ordered a million and one books, and I am looking into GFCF diet options.

I'm in NYC and Columbia has an evaluation center for autism and they are going over our profile to see if we can be fully evaluated now. I hope to hear back from them tomorrow.

I will definitely be looking into 'floortime' and I'm off to Borders to buy probably way too many books than I can digest right now.

Thanks ladies. I guess I just needed an ear and to hear from others that I'm not alone in this painful position of limbo.

[Linda on the move]

Originally Posted by Southern_Belle

I have gone back and forth between peaks of strength (researching, trying to figure out options, support, etc.) and valleys of pure sobbing over the last few days. I think it's less the diagnosis (or lack thereof) that is eating at me and more a feeling of helplessness and not knowing what I can do for my DD.

What you are feeling is normal for what you are going through. It really is a grieving process.

A Dx is helpful in many ways, but *for me* it didn't end the feelings of helplessness or confusion about what to do.

For me, parenting a sn child is a process of attempting to make peace with the not knowing. Even with a dx (a proper dx that fits the child) the not-knowing continues. No one can tell you what your child will be like in 5 or 10 years. No one can really tell what is the ideal treatment/schoo/diet plan.

I'm not alone in this painful position of limbo.

you're not alone.

I think you are doing the right things. I'm always a fan of evaluations.
However, they are just snap shots in time and even one done by the best expert is limited in what it can tell you.

BTW, if I were starting on this path all over again, I'd check into ABA therapy.

[nayma]

just wanted to pop in and say that my daughter also sounded like your daughter in many ways at this age. (she now has a dx of asperger's). while i agree that a dx won't take away many of the really gritty feelings surrounding this journey, for me, it's been helpful in many ways (as it has been for my daughter ). you are not alone in this, in any way, at any time. please know that's what this board is for. anything you feel has been felt by someone here at some point (or many points -lol).
i would absolutely agree with the suggestion to explore floortime, regardless of dx, etc. i started some version of it with my daughter when she was pretty young (less than 2), and i feel really good about what i think it added to our experience. and, really, i feel like just literally being on the floor wiht your child is the best thing you can do. be with her. look at her. listen to her. touch her. these things all sound so simplistic, but i think the beauty is really in *slowing* things down for these kids, simplifying them - not adding more and more to their plate.
i also think (imo) diagnosing girls can be (but not always) a little more complex than diagnosing boys. if you're reading a bunch of books (which it sounds like you are), i'd throw in something about girls, if possible.
xxxxxxx.

[karenstir7]

I wanted to say I could have written your post. I am going through the exact same thing right now. My 19 month old son was evaluated through ECI last month and he is behind developmentally. We just had a autism assessment yesterday through another agency. I will find out the results in a few weeks.
His red flags are:
language loss
not responding when I called his name
fixating on objects- turning them over and over and over
he loves lights and ceiling fans
he does not point to things
he does not follow my point
not much joint interest
he does not shake his head yes or no
he has no words except dada occasionally

I would recommend going through EI and getting their evaluation first. Talk to them about your concerns. Talk to your doctor about your concerns. With the information from EI, your doctor, and all of the research I bet you are doing you will know the right answer for yourself, your daughter, and your family.

Don't be afraid to do something out of fear. Once you have answers you can start making more decisions as to what is the best course of action, and if there is something going on early childhood intervention is the best possible thing you can do!

[sbgrace]

You know, in most areas EI will not only provide therapy but will pay for an autism evaluation if it seems warranted. EI sent us to the children's hospital in our state for an autism evaluation at 2.5.

[AnalogWife]

Originally Posted by sbgrace

You know, in most areas EI will not only provide therapy but will pay for an autism evaluation if it seems warranted. EI sent us to the children's hospital in our state for an autism evaluation at 2.5.

Yeah, that. It took me a while to take them up on their offer for a dx.

[TzippityDoulah]

honestly I'd have her hearing checked before I was convinced of other types of issues. it will cause a child not to respond when they are called half the time (depending on other background noises at the time or which ear is facing you if she has problems in one ear etc...) and it will cause speech delays.

not talking at 18 months is NOT a speech delay by itself. if that was your only concern I'd wait it out. if she has other conerns I would address them one by one. not talking by 18 months doesn't make them anymore likely to be autistic. many children at late bloomers with no ill reason.

I think you idea of doing the GFCF thing is a great place to start for her delays. I had great success with this with my now 5 yr old daughter when she was little. it did wonder for her coordination and motor/speech skills.

[sbgrace]

Originally Posted by HennyPenny

honestly I'd have her hearing checked before I was convinced of other types of issues. it will cause a child not to respond when they are called half the time (depending on other background noises at the time or which ear is facing you if she has problems in one ear etc...) and it will cause speech delays.

not talking at 18 months is NOT a speech delay by itself. if that was your only concern I'd wait it out. if she has other conerns I would address them one by one. not talking by 18 months doesn't make them anymore likely to be autistic. many children at late bloomers with no ill reason.

I think you idea of doing the GFCF thing is a great place to start for her delays. I had great success with this with my now 5 yr old daughter when she was little. it did wonder for her coordination and motor/speech skills.

HennyPenny,
No words at 18 months is a concern. But you wouldn't jump to autism without other flags. The OP mentioned major ones that have nothing to do with hearing:
lack of pointing
lack of imitation
lack of other nonverbal use
add to that lack of comprehending "where's mama", lack of consistent response to name, and I suspect lack of back and forth play (hence the your turn and she doesn't follow up with her play partner at all).
That's why I said it sounds spectrumy and, while a hearing test is certainly warranted, I'd be looking into floortime.

OP, the limbo/maybe she is/maybe she isn't is by far the hardest and loneliest part for most people. I hope you can move out of that soon as it's hard place to be. I was so scared of autism but getting the diagnosis allowed me to grieve and move on. I don't think of it all the time now and I can enjoy him so much better than I did in that worried, analyzing limbo phase. It's a hard spot. All of this is hard.

[TzippityDoulah]

sbgrace

i in no way said it wasn't a concern.i said it wouldn't be a major flag of autism by itself. Lots of things cause speech to delay. i know many kids that don't speak before 2... and then pop out with lots of words. but like I said the other issues could be autistic but they could also be a hearing problem. Hearing can be checked generally easier than getting an autism eval - so it might be worth checking that first.

That said, don't misunderstand - I'm so not downplaying her concern at all! I just mean sometimes different problems can look like autism when they are something else equally concerning but different it all. Hearing problems should be dealt with ASAP! I wasn't suggesting she ignore the symptoms or something like that! I now how it feels to be unsure of what is going on with your child and feel unsure of where to turn. It's not that autism of a horrible diagnosis or anything like that - but it is what it is - a lot of work. and if by chance you could manage to find your daughter has perhaps a hearing problem before you start thinking things like "autism" then that's a great thing! and of course autism isn't the only issue... the spectrum of delays and disorders is long and range from mild to severe is terms of therapies and such.

OP - I'm sorry if I came across cold. not at all how i intended! Your symptoms just seemed like hearing *could* be at play here.

[Linda on the move]

I suspect that since the child is in (or about to start) speech therapy, her hearing either has been checked or will be very soon. That's step one for speech therapy.

[TzippityDoulah]

Originally Posted by Linda on the move

I suspect that since the child is in (or about to start) speech therapy, her hearing either has been checked or will be very soon. That's step one for speech therapy.

well if that is so, then great!