Could my daughter have AS?

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** This is a dup post, originally in another part of this site but I moved it here too... **



Hello, I am a mommy to a 4.5 year old girl. We suspected asd a little over a year ago. My husband and I had an evaluation done and were surprised she did not get diagnosed. We also took her to our school district to test for developmental delays. We basically got a pat on the back and were told she just needed more "stimulation" and she would be fine. Her test scores on the Vineland were either at age range or above. Again, I was surprised.

For starters, here are the signs I see in her...some of them have resolved themselves but I always think they are important to mention...

When she was a baby she never played correctly with her toys. She loved them and played, just in her own way. Dolls were only dressed over and over again, there was hardly any imaginative play. Same with doll houses, she would arrange furniture all the time but no real play senarios. Now, at 4.5 she only likes toys with purpose like video games and the computer. She loves dres up but never pretends to be anything.

She has always been verbal, her first words were on time and she had a decent vocabualry but she only used one word phrases until 2.5. Echolalia kicked in at two and ended about six months later. She also went through a phase of calling herself "you" for about six months as well. At three she finally branched off to sentences but most of them were memorized. Now, she is spontanious but she still struggles. Her syntax and grammer are very poor. She has a lot of the same conversations and asks a lot of questions she knows the answers to. Her conversation skills are not as well as other kids her age, but, she can pass to the untrained eye and appear normal. She mostly talks at you, rather than with you. She LOVES to talk though. She is nonstop and not considered shy at all.

She has a repetitive movement when she is excited. Its like a whole body jolt. She rubs her thumbs over her fingers, both hands and distorts her face at the same time. It looks like she is also holding her breath. She started doing this at one and it has been going strong ever since. It happens every day, several times a day. We can redirect her without problems but we cannot get her to use a more socially acceptable movement. We tried for years, she will not budge.

Her memory, scary! She remembers everything. She has such good recall that half the time I dont know if she is right:) She can tell me things from when she was two. She remembers where her toys were bought and who bought them for her. She remembers events and can recall the littlest details, like the things we ate or what we were dressed in.

Other than that, she does have some positive signs...

Her eye contact is ok. At times I think it can be better but overall, it is considered good by the doctors who evaluated her and school district. She is in preschool now and her teacher tells me she uses excellent eye contact.

Socially, she seems alright. She enjoys kids and can play well with them. I do worry though about her repetitve conversations though. I think her odd speech issues will become more noticeable as she ages. But, for now, she has a group of friends at school she plays with and talks about all the time. She is always asking for them to come over. She loves the phone and has conversations with her Grandma and her Aunt all the time. With me, she is very affectionate. She likes to be with me ALL THE TIME and although I like it, I wonder if that is normal. She calls me her best friend. If she had her way, we would have our own room and my husband would have his own room:) She loves to rough house. She seems a little tom-boyish. She really enjoys being outside and loves to ride her bike or play soccer.

Educationally, she is on target. She is doing very well and can even do things that amaze me, like counting backwards from 18. She seems to pick up on things fast, like learning letters and sight words. She knows the labels to a lot of different stores...she likes shopping:)

Despite my worry about her language development, she has always scored high on her speech and language testing. Her receptive and expressive language have always scored well. So, she has the tools to talk, she just lacks the know how to get it out right.

I have had her in OT and her therapist dropped her. She said my daughter was a low needs patient and basically said I can give her trreatment at home. The only sensory issue is the stim. She is not senstitive to lights or touch or so on. Her coordination is also ok.

We also had her in speech and she is also no longer in that. Her therapist said that developmentally, she is on track. Her sentence length and vocab were fine, so, she suggested peer interaction to help her with pragmatics. We uped her school hours and see some improvement but I think she needs more help than that...

Well, sorry to ramble. I am just looking for some insight. As of today her only diagnosis is sensory dysfunction and developmental language disorder. Both so "mild" we are struggling to find her help. I know she is not a classic case of autism but the more I read of AS, the more I wonder...

She also seems to flying under the radar. I KNOW something is up but when she is at school or infront of a doctor she appears fine. They look at me and wonder why I worry... They are not spending enough time with her though. I spend ALL my time with her and see it, so, I know...

Does this sound like AS?

I do not know....I do not even pretend to know. But, I appreciate your observations. I know virtually nothing about children. You mentioned she is not shy and seems ok socially (at least thus far). Perhaps her other "symptoms?" are just a childs way of growing up. By this I mean that the growing up process is often disjointed, not continuous. Plus, she does have good eye contact and coordination. But, you cannot negate a mother's intuition. I wonder if there are other family members w/ autism? Autism is a highly inheritable mental disorder. You did mention stimming behavior - did her doctor get to see this? Just wondering....

Anyway, as for me, when I was really little (4 or 5?) I would cut & paste images, such as from magazines, onto huge sheets of newsprint for indefinitely long hours. I would not stop until I was physically forced to stop. Then, my hand became abraded from the friction of the scissors and I had to be treated at the hospital for blood poisoning. I was also oblivious to other children. I am still painfully shy and rather impassive. I would inadvertently remember irrelevant data, such as license plates, lists, etc. Other difficulities as well too. So, my symptoms were/are quite indicative of autism. I am uncertain if those exhibited by your daughter are within the spectrum or not......unknown. Maybe just document what you observe, which you are doing, and wait and see.

Okay - I did not really help at all! But, again, this is not my field (I'm a scientist/chemist). I suppose, if you have further concerns, you could take her to a specialist instead of a local medical professional. Maybe you could video her behavior to share too. What about her senses? I have enhanced overlapping senses and an eidetic memory. Admittedly, you may not be able to "know" this about her, since it's inside of her.

Look into THEORY OF MIND, which develops in children just prior to age 5. This is THE marker for autism! Fascinating theory as well - I use it in theorectical math. While I understnd TOM as a concept I do not possess it (trust me, it's optional). Um, good luck. From your description, she seems like a dynamic child!

Great insightful authors/researchers: Simon Cohen-Baron (sp?) & Olga Bogdaashina.

mommy3, I'm going to disagree slightly with lab-pet, autism is not a mental disorder but a neurological one, the brain develops on a slightly different path.

When you say doctors examined her do you mean medical, neurological or psychiatric? It took several years before Z was dxd with AS, and the process is continuing. Each person develops in his/her own way, other issues may appear as your daughter grows which may make a dx more obvious.

Do not give up. Lab-pet said make a journal, an excellent suggestion, document your observations, both ,both typical and atypical behavior. The more information you have the more likely it is that you will be listened to. Also watch her social interaction with all age groups, that can be significant. hang in there and fight for this child, after all you are mommy.

Also keep a small video camera charged up and at the ready, so you can actually SHOW the doctors the things that you are noticing that may not be present when they see your daughter, ours used to be a bit of "singing frog" as well (now, not so much, it's kind of clear), and this removed that variable. It perhaps can be more helpful than the journal in some cases.

At her age its really not a good idea to slap a label on her. She may or may not be autistic. Some NT's stim on occasion when they are put under extreme stress. It's nothing to crack up over. Increasing a childs schoolwork and taking her to speech therapy at age 4.5 seems a bit much. Don't press so hard. You will end up with worse problems if you control every moment of her day with NT training. Leave her alone and let her development into her own person. Be careful of the early diagnosis bandwagon. There's kids no doubt normal being labeled as autistic just because they pitch temper tantrums for instance. Parents seem brainwashed into thinking no child is normal these days. For a lot of little kids temper tantrums are normal developmental phase and have nothing to do with autism. Repeatitive speaking is not necessarily autism. A lot of people do that who are not autistic.

Parents need to chill out and quit being so bound and determined to dx their child with a disorder. Little kids are weird anyway. Don't be in such a hurry to give her a life sentence.

Hello and thank you for the responses.

My gut tells me asd. I am having a hard time understanding why it is so hard for a doctor to dx. Not that I want the label, just peace of mind and an idea of what to look forward to.

Do I need to be worried? What should I expect? My heart breaks thinking she may be teased and bullied.

Any suggestions as to how to get her some therapy? Speech is more important to me than OT. I was paying out of pocket for a while and it seemed worthless. She was basically sitting on a floor with her therapist telling her what pictures where or what items where and what they did. She knows all of this. Her problems are more with how she gets it out. Typical errors are..."Where Mommy at is she?" Or, "You can have this of you want..." She asks alot of questions and she already knows the answers... There are big problems, its just not with her vocab or sentence length. I am hoping her Kindergarden teachers will see this and step in...but, who knows... I also think it is hard for her to express herself, I am worried about share and tell and times when she will have to explain herself.

Also, do kids ever outgrow stimms? I think this will make her a target. It looks different and kids do not care so much now, but, next year may be a problem.

I used to bang my head to fall asleep at night to fall asleep - was I stimming? Can kids without asd stimm? I dont think I am asd, but now, maybe?

Thanks and sorry for all the questions, I appreciate the help.

I don't think you should be worried -- or excited. AS comes with both advantages and disadvantages, but you don't yet know if she has AS. You'll have a MUCH better idea by the time she's 8 or 9. And, meanwhile, it sounds like you're doing pretty much everything possible to help her development anyway.

Stimming doesn't usually go away 100%, but kids who stim in obvious ways get teased, and often (usually?) find ways to minimize it. My wife, for example, did things when she was a kid which could have qualified as either stims or tics, which were extremely obvious. As she got older, she kind of transferred that energy over into a little fidgety sort of thing which she does occasionally, but you'd have to spend an awful lot of time with her to ever notice it at all. So it creates no social issues whatsoever. Bill Gates is more of an obvious stimmer than she is, and it doesn't seem to have held him back all that much, either.

Just relax, and keep being a good mom!

Its great that you are concerned for your daughter, but I think you are worrying too much. About the bullying it will happen unless she is homeschooled, but she could still get bullied by siblings, cousins or neighborhood kids anyway. Bullying is a right of passage for Aspies as well as any other kids that are very skinny, fat, short, dark skinned, freckled, red haired, wear glasses or have some physical disability or speech impediment. I do know if other kids find out she has been diagnosed with something like Aspergers or the teacher knows then she is more likely to be bullied. I know of a 5 yr old boy whose teacher makes fun of him for having Aspergers in front of the whole class. None of the kids will even speak to him. Alot of times you don't know which teacher your child might get so its best not to let them know if they are immature adults and can't handled differently abled people. The thing with Aspie girls is she is much more likely to figure her own way to fit in and remain undetected. Trust me we just get labeled as nerd girls or bookworms or tomboys and its much easier in school for us than it is for boys. As a girl she is also much more able to pick up social cues and you may see her observing other people alot. That's how we learn. You can't win her battles for her. Let her find her own way in the world and don't try to live her life and protect her from everything. Life is cruel and we all have to learn this in order to survive.

Quit worrying about the bad sentence structure. She's a little kid!! A lot of 5 year olds can't even speak so if she is speaking in sentences even if they are somewhat backwards she's still doing well. Just read out loud to her a lot from books she enjoys (not schoolbooks) but kids story books. That's how kids learn language...from parents reading to them. Videos are poor substitutes.

As for the head banging that is common in any person with under developed neurological systems and not just autistics. Its also common in all young babies. That's why soft bumperpads were created for cribs you know.

except for the language piece, our daughter sounds quite similiar to yours....when we took her for a dx at age 8, the doc told us she's very persistent & doesn't seem to reciprocate emotion ( ie; if you tell her you're not feeling well, she'll say: Oh, i'm sorry ...and then go right on talking about whatever she was talking about )........and when she plays with toys, she's not typical, but they just considered her different.............her dx is ADHD~hyperactive impulsive type. she has alot of atypical behaviors which the docs have written off as just being quirky.
i'm still not so sure that she's ADHD, but we're waiting it out ...she's receiving services for her "issues", and that is what is the most important for her....not the proper dx.
i know it's hard to relax about this, but the more hyped up you get with providers, the more you end up looking like one of those mom's who has Munchausen's by Proxy~makes their kid sick so that they(the mom) can get attention from the docs..............
If i were you, I'd focus on making sure she receives services from a Speech and Language Professional. That seems to be what she really needs at this time.
Just curious~ are there other aspies in your house ?.....daughter's doc wrote off alot of daughter's behavior as being reflective of having an aspie dad and brother.

Hi,

My daughter was diagnosed at 4 1/2. I never really thought of it as "slapping a label" on her as another poster put it. For me, it provided the insight to understand my daughter. It basically validated what I had been feeling for a long time, that there was something going on with her I did not get. I had never heard about Asperger's prior to my daughter's diagnosis, and in reading about it I began to see how I had misunderstood her and where I could better help her.

That being said, it can be difficult to know at such a young age what is just typical kid stuff and what might be AS. It sounds like you are aware that there may be some issues, and you can just keep an eye on it. When she is in kindergarten next year five days a week, you will get a lot more feedback from the teacher. And, if you have the chance to volunteer in the classroom you can observe her and see how she is doing.

With regard to the speech therapy, in my experience the quality can vary greatly depending on the therapist you are working with. We took a while to settle in with the therapist we are using and now she is great and is very tuned in to how best to work with my daughter. In our particular situation they do a lot of role play and also are working with some of Michelle Garcia Winner's materials that have to do with social understanding. I am certainly no professional, but based on how you described your daughters speech (mixing up word order, etc) this does sound a bit unusual and like something that could be addressed in speech.

I agree with the other posters that you sound like a great mom. And, I wish you and your daughter the best of luck!

This is simply horrible advice, sorry. If there is actual cause for concern - not just one thing, like tantrums, but a variety of things, including (but doesn't need ALL) toe walking, switching up of pronouns, lack of social involvement with peers, seeming distance, echolalia, what have you, by all means, at least explore the issue further. The assumption that parents are just hopping on a bandwagon to get their kid diagnosed is misplaced with nearly every family I've come across, including my own family, who have a youngster who HAS been dx - not to mention presupposing that all doctors are so unscrupulous that they'll just give a dx to anyone who asks. For most of us, being able to change OUR behaviors, as parents, to suit our CHILDREN'S needs, is the main reason I hear cited over and over by other parents I've met in the process. Now we personally may be lucky that we live in such an open minded town, but alerting her teachers (not the state - that's another issue altogether) of the diagnosis, has made our daughter's desire to go to school shoot through the roof. She gets upset on the weekend when there's no school - a complete turn around from when all of us silly adults were stumbling around in the dark. A parent has a special bond with a child, and can know when something is amiss, and in this case, whether it's AS or what have you, it's not a desire to "label" that drives a parent to seek help for their child, it is the desire to make seek clarity to something that doesn't quite make sense yet. That gut feeling is ignored at your own, and your children's, risk.

Agreed. I believe it to be the defining characteristic. I like Uta Frith: "Autism and Asperger's Syndrome." The Sally-Jessie test in that book is very good. It goes something like this:

Sally had a marble and she put it in her box. Sally went out to play. Jessie came and took the marble out of the box and put in in a basket. Sally came back to get her marble. Where will she look?

The autistic answer is "in the basket." If you have a normally developed theory of mind, a 5 year old child will know that Sally believes her marble to be in the box where she put it.

Ticker ~ I am sorry that you feel this way~you have obviously had a rough road to travel on yourself.....i do know of moms who are anxious to dx their kid with just about anything~it's really up to the dr's to decipher who's just cuckoo, and who's really reporting serious symptoms. there's nothing wrong with being concerned about your kid's health and well-being...that being said, i do agree that too many kids are being dx-ed and medicated~not just with aspergers or autism, but ADD as well.....IMO, the generic problem with parenting today is that we've all been told that we can't spank our kids, shouldn't even raise our voices against them~and i understand this and agree with this...but no one has given parents real training as to what to do with difficult kids. we're all here in the Parent's Forum struggling to find the answers that someone needs to give us....Sure there are plenty of Parenting books out there. I've read a TON, but so many of them don't offer real-world advice...so many of them are written by people who have kids whose biggest problem is that they're gay or don't clean up their rooms~give me a break!

The medical community doesn't have a very good track record of recognizing ASD's in young children:
http://www.aan.com/professionals/practi ... gl0063.pdf

I think that if you as a parent are concerned then you need to pursue an answer until it fits with what you are observing. If she is showing traits that are AS-like, then even having that confirmation from the doctors along with recommendations could be helpful as she enters school, especially in getting help with social/speech issues. My son falls into a gray zone diagnostically and the school has done a wonderful job helping him through his challenge spots and did so in a way that was respectful of his needs as an individual.

What type of specialist did the evaluation and concluded that she wasn't AS? Typically developmental pediatrians, pediatric neuropsychologists and Autism Clinics are more apt to be accurate. Did they use a formal assessment tool?