Could she have autism?

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We have always knew that there may be something not all right with our oldest daughter. She is 2.5 years old and we have been asking different pediatricians about her behavior and lack of speech but every time we have asked they just brushed us off. We just moved to a new small town and they had a free early intervention testing at the head start. So we went and they determined that she is developmentally delayed. She is 31mo old but tested at 22mo old age. She will begin speech therapy in a few weeks but we know she needs more than that. We have a doctor appointment with our new pediatrician here and we are determined to get a referral to a specialist. Anyway here is a list we have made of her behaviors and such. I wanted to get this boards opinion on what you all think. Also what do I do if this ped. also ignores our concerns? The speech therapist thinks she has a problem but was reluctant to say more.

Thank you in advance and sorry this is a long list and I am sure I have forgotten some items.

• She only says about 50 words and usually does not use them but on occasion. She doesnt know daddy and mommy, she will interchange them or just does not call us anything. They did say she has disassociation .We can only understand maybe 25% of what she says.
• She growls, screams, grunts and squeals when being greeted or when asked a question.
• She shakes when she is excited or frustrated or even just playing. She will clench her fist and her muscles get tense and she grimaces/grins.
• Her fingers curl in when she is relaxed and she clap in-between doing something or when she is excited. Only single clap but will do it a minute apart or so. Also will flap her hands then clap. This is a newer behavior. She also holds her hands over her ears and does a lot of hand motions near her face.
• She does not understand anything we say to her. She will not tell us if she is hungry, wants something, needs to potty nothing.
• She does not hug and kiss us often, only if it is part of a routine like getting ready for bed or goodbye. She does not like to be held unless it is on her terms.
• She also has a lot of repetitive behavior and words...like taking a necklace on and off for hours, saying a certain phrase 10-12 times.
• She also never stops, she is always moving and never seems to focus.
• She also does not express emotions very well and does not seem to have any empathy. If someone is hurt or if she hurts someone she just stares at them/through them.
• She does not respond to her name very often. She will not engage with you when playing or talking to her. When she looks at us it is more like she is looking through us not at us.
• Can not follow simple directions or follow through with many things.
• Toe Walking and running.
• Doesn’t feel pain or over reacts as if in pain, when nothing is wrong
• Doesn’t want us to play with her. Will get upset if we try to play with her, but not all the time.
• Wakes up screaming in the mornings and sometimes after naps. Will have night terrors where you can not touch her. If you try to console her she will strike out and thrash around.
• Does not eat much. She loves fruit, but will not always eat a regular meal…and will just push the plate away or have a crying fit.

sounds as if you have reason to suspect ASD, and I am glad that you are going with your gut and are persuing an eval. Keep going until someone listens! You are mom and know her best!

If your new p doc does not respond to your concerns, ask the speech therapist if he/she is familiar with any p docs in your area that seem to be more knowledgeable about ASDs. Early intervention is SO important, many docs are starting to get it that they need to listen better to parents' concerns and error on the side of caution for having kids evaluated rather than not. It is so unfortunate that there are still so many docs though that are more comfortable taking the wait and see approach. I don't know if many docs have been sued for malpractice for missing an autism diagnosis but IMO more of them should get sued and then more of them would get educated! It is hard enough as a parent when you are worried that your child has some serious difficulties, getting the brush-off from your doctor just adds insult to injury.

Sorry, I'll get off my soapbox now!

Thank you both. My husband and I just keep thinking maybe we are over reacting but I think it is just a little bit of denial. He is having a harder time with it. He has a little brother (adopted) that has Autism so he knows what a difficult road it can be.

I forgot to also say I did a M-CHAT to take with us so we dont have to waste time in the office. She scored a 7 on it. So hopefully with everything we have going on it will be no problem to get the referral and get her the help she needs and we need.

The only people we have talked to about this is my parents, they are still on the fence. They dont want to believe that anything is wrong with her, but I know they see some things. My grandparents also know and my grandmother actually blamed me for her being delayed because I sheltered her and dont let her go with anyone. I do not let my grandmother babysit for various reason and she has always resented me for it. I also was very protective of Ara because it took us 6 six years and one miscarriage to finally have her....so of course I am a protective Mommy. My grandmother was also not happy when we got pregnant again, because then she would have to share her attention. So she is selfish to say the least. She also always want to leave our 8mo old out of fun activities and outing... and she wonders why I wont let her babysit. Boy did I get off topic with this post...lol

Anyway, I guess I am just looking for support and information.

Print out your list above and take it with you to the pediatrician. Ask who he or she refers to for autism evaluations, or how to contact Early Intervention in your area. (If you tell us what state you're in, someone here may know how to access the system.)

Ideally, you want to find someone with "developmental" in their title (developmental psychologist, developmental pediatrician) who is trained to administer the ADOS. Alternately a multi-disciplinary team that has a psychologist, occupational therapist, speech and language pathologist, and perhaps other specialties can do a very thorough evaluation.

It is typical I think for there to be some denial. As the process goes through its course some people will understand and some won't. The ones that do, won't understand completely because they don't live it.

Your grandmother is similar to my in-laws. Some people just want to blame the mother (or father, or both) and nothing is going to convince them otherwise. Usually it is the most self-centered, ones themselves. Just try to tune out the nonsense the best you can. You have every right to be cautious with your child, and irresponsible people who do not understand don't get a say.

The doctor appointment went very well. The doctor was impressed with how tuned in we were and especially with our list.

She believes that along with being developmentally delayed that our daughter has neurological/mental issues. She is going to get us a few referrals and was very concerned about Ara. The doctor was great and tried to play with Ara, sit and hold her ect. She said there are some major issues that she sees, but doesnt really know if they fall into the Autism spectrum.

Also Ara's speech therapist emailed me and wanted to know if we wanted to be seen for their Full Circle eval. It is a half day event were she would be seen by several different specialist and then they would all get together to help with a diagnosis and a plan on what will help Ara the most. Of course I jumped on this at once, so we are waiting to here back on when our appointment will be.

So overall I am very happy with today. We are starting our journey into getting her and us some help. Thank you all so much for the help and support.

Thats great. Keep us informed (if you want). The Full Circle Eval sounds like it could be good.

I think you are right to persue it, go with your gut feeling. Its great that you have got so far so soon. Good luck

Thank you I will keep everyone updated, I am so glad I found this site.

I can not tell you how happy I am to begin this journey as it has taken over 2yrs to finally get someone to listen to us. We knew there were problems by the time she was 6mo old.

Well, if you're still having doubts; maybe go to the GAD section and cross reference any similarities you can find?

I was diagnosed back in the 4th grade; but I say the earlier the better. Get too old and some people will be in denial about themselves (I didn't actually understand what it meant at the time)

But hey, I'd probably be some stereotypical jock if I wasn't an Aspie. And that's boring.

We knew our DD4 was different from around that age, and in hind sight its all become clear We now have another daughter, just turned 1 and she is totally different, this highlights it even more. They have some similarities as the little one copies her big sis and also they are sisters afterall but in terms of behaviour they are poles appart! It really is great that you have taken action early, I spent a lot of time blaming myself for not coping with having a child and dealing with post natal depression. When everyone around you tells you "she cant be autistic girls dont get it" and other such nonsense you begin to doubt yourself. Now you have found this forum you can choose who you tell about your experiences and chatting with like minded people will make things a lot clearer than being fobbed off by people who dont understand

Hi I don't usually visit this part of WP, but I couldn't help but chime in. I'm a neurotypical (non-autistic) sociology grad student studying the sociology of autism, which is a new field. I specifically study autistic identity and how autistic people learn neurotypical behaviors and "pass" as non-autistic.

My little brother has high-functioning autism. He's 26 now and what you would call "normal". You can tell he's autistic because he's a little odd with his mannerisms and speech patterns, but he's smart, looks normal, works, has lots of interests, etc. He didn't speak in sentences that made sense until he was 7 or 8 and he also didn't read until he was about 9. But then he just started reading books like nothing was wrong (I don't think anyone taught him, I think he picked it up himself) and when he finally started speaking to people he just spoke like an adult.

We just left him alone and let him be "weird" when he was a kid- like let him wear what he wanted, eat what he wanted, and more or less do what he wanted, and he found ways to communicate with us. He started playing video games with me and my older brother when he was 4, for example. He made jokes that didn't make sense and used words that didn't exist and we just laughed like we got it and pretended we understood his words. We didn't want him to stop communicating with us. We didn't know what he had was autism, because this was the 80s and we lived in an area where the doctors were not educated in emerging diagnoses.

He did just about all of the behaviors you listed. The flapping, growling, not liking to be touched, etc. He also spit and hit and laughed afterward, like uncontrollably, for about a year. Then he just stopped doing that on his own. I wish I could ask him why he was doing this, but he doesn't remember it now.

My brother never had any therapy and also does not know he has autism. I have not told him and he hasn't seemed to realize it. He works out social difficulties on his own and seems to explain his autism by seeing himself as shy and a nerd. I think this is functional and I don't wish to disturb his self-identification.

I'm telling you this because I think you should give serious thought to how you want to treat your child's differences. Is it no big deal like having a child of a different race, or is it a "mental and neurological problem"? Does she really need to be like a neurotypical kid, or is it okay to let her be different? I would advise you to browse the adult section of the forum and look at the experiences of some autistic adults and think about this.

Another thing I want to mention is that your daughter PROBABLY CAN UNDERSTAND YOU, no matter how she responds. http://www.youtube.com/watch?v=34xoYwLNpvw

I don't mean to scare you with all this, but I know there's a lot of misinformation out there so it can be emotionally very hard when you first realize a family member may have autism. But it's not a bad thing. It's really okay.

@ VAGraduateStudent

First I would like to say we have given this serious thought, other wise I would not be on here seeking support and info. I take raising my children very seriously. We are not trying to change who she is, we just want to get her some help so she will have the tools and support to live a happy life. I dont understand this sentence" Is it no big deal like having a child of a different race, or is it a "mental and neurological problem"? What does a child of a different race come in? Having a child of a different race is nothing like having a child with any sort of problem or delay. As far as it being a big deal or not about her specific problems, it is a big deal to us because like I said above we want her to have the best life that we can give her.

I am not sure if I have just misunderstood your post or am maybe reading to much into it (It has not been a good morning..lol) I dont know.

Edit to add: Also this help is not just for her it is for us as well, as a family.

[quote= We knew our DD4 was different from around that age, and in hind sight its all become clear We now have another daughter, just turned 1 and she is totally different, this highlights it even more. They have some similarities as the little one copies her big sis and also they are sisters afterall but in terms of behaviour they are poles appart! It really is great that you have taken action early, I spent a lot of time blaming myself for not coping with having a child and dealing with post natal depression. When everyone around you tells you "she cant be autistic girls dont get it" and other such nonsense you begin to doubt yourself. Now you have found this forum you can choose who you tell about your experiences and chatting with like minded people will make things a lot clearer than being fobbed off by people who dont understand [/quote]

Thank you. I am enjoying reading all the posts and have found a lot of hope in reading post from the adult autistic community on here.
I have heard the "girls dont get it" as well, one of the doctors we went to actually told us that. The same one said that she had no speech concerns and that she will out grow everything.

Well autism isn't something that can be treated or cured, so it's not a disease. There are different things going on neurologically, but there are also different things going on neurologically for females and males. We don't say that females are wrong or diseased because they're different from males, although we USED TO SAY THIS in the 19th century. There has been some evidence that there is an autism gene, which would be a mutation, but I have a gene that makes my hair red and that's a genetic mutation as well. So I don't say that I have "red-hair disease."

When I say that being autistic is similar to being of another race, what I mean is that it's "another type of person" which is a minority from what is considered "normal." White people are the norm, and so are non-autistic people. But that doesn't mean that if you are different that you need to be corrected to the norm.

This is a sociological viewpoint I'm talking from and it supports diversity. I have heard a lot of these ideas discussed by autistic adults, but I believe they frame it as a "common-sense" approach and not sociology. It could be said to be both.

It was certainly not my intent to infer that you weren't already considering this carefully. Why in the world wouldn't you? When most people first hear an autism diagnosis (or any diagnosis) for their child, their first reaction is "how do I help my child?" This is obviously what you're here doing. But my point is that there are LOTS of doctors and many other parents who will answer that question for you by saying that you can "treat" your child by trying to "correct" her behaviors instead of trying to understand them.