Could it be AS or did I make her this way?

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Hi! I'm a NT mom of a possibly AS child. We are going to see a Psychologist to confirm. I'm here because I am desperate for answers. I have been wondering what we did wrong as parents to make our daughter not want to hug us, but this website has given me hope. Perhaps she doesn't hate us...perhaps she just doesn't know how to show affection and express her feelings. I wish her pediatricians would have thought of this possibility before! They are all the same....when I describe the issues she has, they suspect that she was abused in her past and ask her all kinds of questions. When they rule out abuse, they say, "Oh, it's not unusual for kids to go through that phase...she'll probably grow out of it". Well, these symptoms started showing up at about age 5 and have only gotten more and more extreme.

My daughter is 9 and hates affection...hugs, kisses, cuddles, putting your arm around her, etc. She can react with anger or indifference when we try to hug or kiss her...we just never know. She won't say "I love you", and will barely mumble it back to us if we tell her first and prompt her to say it back. She doesn't do apologies very well at all....if she does say she's sorry, she never sounds like she really means it. On top of that, she mutilates her hands and feet....biting the nails and skin around them until they bleed. She has a habit of what I call "snuffing" that she does constantly, especially when she is nervous. It's like she is drawing up a hocker...a really awful sound. She is so shy about her body that she won't even change in front of me or her friends...she won't even let me in the room if she has a towel or underwear on. She gets extremely upset if someone accidentally walks in on her...I mean tears for a long time. Though she seems to hate physical affection, she can be quite physical with her brothers and sister...often grabbing them hard from behind and lifting them up....sometimes she can get pretty rough, but she doesn't know it. When she gets excited she will smack us on the arm...not to hurt, but as some strange way of showing affection I think.

Other than those things, she is quite a "normal" little girl. She is very bright. (I homeschool her). She loves to read and write, and even likes sports. She has friends whom she gets along with fine. She can hold a conversation, but usually doesn't like to talk unless it's something she wants to talk about. She sometimes walks away from me when I'm in the middle of talking to her or trying to teach her something. Or she will hide her face in her hair so she doesn't have to look at me.

I'm wondering if any of this sounds familiar to anyone.......??? Am I on the right track here? I appreciate any input you can give me. Thanks!

Hi there, Iluvgsus

I think you are on the right track. Sometimes you've got to keep pushing and even seek multiple opinions to get a diagnosis of an autism spectrum disorder. It's an "invisible disability" and can be difficult to pick up, especially when it's mild (like Aspergers, which is a mild ASD) and ESPECIALLY in girls (where the signs can be more subtle and a bit different to signs found in boys).

My 5yo daughter was only diagnosed with autism a month ago and I had to really push to get her a proper diagnosis. A pediatrician she saw several times last year dismissed my concerns of ASD and wouldn't even do an ASD assessment; she just said that my daughter was globally delayed and maybe intellectually impaired (which she certainly is not). I had to take her to a different ped to get on the right track and even he wasn't sure, so he referred her to another ped in his office who is a top specialist in ASD, and that ped was finally able to confirm my suspicions that it was autism.

Autism/Aspergers manifests differently in every child, so I can't say that my daughter sounds like yours, but the things you've mentioned do sound like possible signs.

Lack of affection - Very common for people on the spectrum. If she's reacting with anger, it could be a sensory thing; that she is oversensitive to touch; or an issue with personal space (a lot of people with ASD get extra distressed if their personal space is encroached on)
Biting nails and skin - Sounds like a "stim" and not an uncommon one, either.
Snuffing - Could also be a "stim"
Getting upset if someone walks in on her while changing - She could have the rigid personality common to people with ASD and likes thing to be 'just so', ie. she must always change her clothes herself, in private, and if anyone disrupts that routine she has a "meltdown" (another autistic trait). It may also be about personal space; many people with ASD are very particular about personal space. Not sure about the shyness about nudity thing, though. Haven't heard of that as a trait.
Aggression - Very common. My daughter isn't aggressive but she is aggressive to her siblings.
The conversation thing - Very common with aspies. They like to talk about things that interest them and may lack the ability to understand that others may not be interested. May also have trouble with conversational skills in general, ie. knowing that there is an appropriate way to end a conversation, you don't just walk away.
Hiding her face in her hair - A lot of people with autism find eye contact confronting or very difficult. She may be hiding her face because you're trying to make too much eye contact while teaching her.

Hope this info helps... and hope you get to the bottom of this soon and get the correct diagnosis for your daughter, whatever it is.

Laura

You didn't do this to her. It's not your fault.

This a good place to start.

You might also want to read up on "siblings and asperger syndrome". It may give you more answers.

Finally, there is a book called "Aspergirls" by Rudy Simone that might be really helpful to your daughter. Girls with AS frequently don't show the same symptoms as boys because they are better socially acclimated. Thus, getting a diagnosis for an AS girl can be fairly difficult.

She's a female, I'm a guy.

She's young enough to be my daughter; I'm an OLD COOT!

We are most likely of different races, and definitely from different cultures.

We come from two completely different places in life...

Yet the similarities are striking.

Nearly ALL of them apply to me!

Dear Iluvgsus

Your line "I have been wondering what we did wrong as parents to make our daughter not want to hug us" made me want to cry.
I have felt like this for years (really years) with my daughter who is now 15... What you describe is very similar to her. Stick to your guns and keep fighting for a diagnosis or investigations because you will get somewhere in the end. Today, just two hours ago, my daughter was diagnosed with AS...

Milliesmum

Not to be insensitive, but 'What did I do wrong' is indulgent self-pity that can only harm your child. It is extremely destructive to the formation of a child's confidence and self-esteem to feel that their parents think of them as defective. Different is not broken - there is no fault or blame to be placed.

You made your way here which is saying a lot about how much you love your child and determined to find answers.

There are three in our house all doing separate things. The only time we interact is when my two kids play games or one of us has something to say and wants validation or another's view. We don't hug either and I did not think much of it. I was very huggy and affectionate when both my kids were babies but as they got older it just tapered off and because I was the way I was (not knowing what AS was), I just figured we were not huggy and that was that. I don't initiate hugs but my daughter 13 will come and lean against me and I (or both) will make a mmm... sound acknowledging her action and then she'll go on her way. Sometimes she does cuddle with me and knows it is cuddling by saying "cuddle" when she is next to me. My son who is 20 does not hug but tells me when he is going out and when he returns. We are not hurtful in our words or actions, so I take that as a high level of affection.

Welcome!

It does sound like you have an adorable little Aspie girl there. Sometimes you have to fight for your kids. We parents sometimes just *know* that it's not what the doctors say. My youngest is going through that now. It's been more than a year since he started having digestive issues and the peds totally missed it. His Dr finally said she wouldn't see him any more for stomache aches and prescribed Zoloft, an antidepressant contraindicted in children except for OCD. Basically she was giving him the drug to make him stop complaining, not to fix the problem. So far a pediatric gastroenterologist has found two real problems that are causing his symptoms. The pediatrician missed one very easy to diagnose problem, and one harder to diagnose problem. Neither of those problems are in his head as she surmised.

Don't blame yourself for this. First, it's really not a bad thing (believe it or not), and second it's genetic, some people are just born this way. I haven't blamed myself so much but run into people who think that my children's autistic behavior is the result of their idea of bad parenting, as if I could just spank it out of them (as if!!). As you learn about Asperger's and other ASDs you will find out that your daughter isn't broken, just different, and she has a lot to offer. Once you can get beyond trying to get her to act like other kids (and it sounds like you're soooo ready for that, what a relief, no?), you'll start to really enjoy her for who she is. I'm so glad you realize that she's not mentally impaired just because she has some developmental things going on. I'm so glad you stuck with your daughter till you got to a doctor who knows something.

There is a lot of stuff out there about how awful autism is, and sometimes it can be really difficult for the person who has it, but more often than not it's a gift.

I wouldn't give up my children's autism for anything. The world would be a poorer place without kids like them. My eldest son has a boatload of other medical problems I'd cure in a heartbeat, but his AS, no way! He'd not be himself without that.

Wow, thanks for all the support! I am so relieved to know that this is just the way God made her, and that it's not something I did. All this Autism and Asperger's stuff is very new to me, so please bear with my ignorance. I am seeing the light now, and will stop trying to correct her behavior and quirks and just accept that this is who she is.

For the record, I never blamed myself for her having Asperger's, as Asperger's is not a bad thing at all, but rather a blessing. It was before I knew what Asperger's even was that I felt I must have somehow done something to make her not like affection from me. I am so glad to know it isn't me, and I will try very hard to love her little quirks that have worried me in the past. She's perfectly wonderful the way she is......I'm the one that needs the work!

You are all great. Thank you for all this wonderful insight!

my aspie is 4 and the lack of physical affection has been one of the hard parts for me as i am pretty physical myself. i am lucky tho as he is pretty affectionate for an aspie. touch can be difficult for them, even registering as pain. i simply ask my son for a hug or ask permission to hug him. if he says no, its ok, and he sometimes does say no. most of the time tho he is willing to give or receive hugs. the key with him is getting permission, it gives him control over whether it happens, and hugs should be firm and brief, not touchy feely. "ninja hugs" that are a suprise are not received well.

my son is physically rough as well. its not aggressiveness, not intentional inflicting of pain, but rather a lack of understanding about how rough they are. just last night i got a good smack on my back as a greeting. i just try to teach my son about soft and hard touching, as well as apologizing when you hurt someone, even if it was on accident.

your daughter sounds a bit like my son. you also describe traits that my SO has (also an aspie). he bites his wrists when agitated, and has this funky breathing thing he does a lot where he blows air hard out of his mouth. they are stims, and your daughter probably doesnt even know shes doing it.

one thing i would suggest is trying not to equate non-autistic behaviors with "normal" because that means the autistic ones are ABnormal. and autism is really just another way of being. it may not be typical, not the majority, but its normal, if you are autistic or live with one =)

*giggle*

You'll probably still need to correct her behavior, like any kid...but I bet you know that. It's a lot to absorb this Asperger's thing. I've been at it a while now and am still making mistakes. My 11yo Aspie son just told me about something I was doing, in an effort to help him, that was in fact not appreciated. Now I know and I won't do it anymore.

Sometimes my kids need to adjust their Aspie behavior, not to become like NT kids, but to find a middle ground where they are comfortable but can also make NTs comfortable enough with them to get along in life. If my children want to have certain kinds of jobs, or certain kinds of friends, they've got to work out how to get there or if the necessary changes are worth it to them and those jobs and friends will have to figure out if what my children have to offer is worth making some accomodations. It's a two way street and our kids are way worth it.

As your daughter grows up she may find all sorts of ways to express her affection toward you, and once you understand what that means you'll get the warm fuzzies you need (and that's a legitimate need too!). One way a lot of Aspies show they like someone and want to connect with them is to monologue at them about their special interests. If your daughter is coming to you to tell you about a subject she likes she is actually showing you affection in her own way.

This is very enlightening. Often while I am awkwardly trying to hug my daughter while tucking her in bed (awkward because she almost always tries to block me by hiding under the covers), she will cry real tears and say I am hurting her. I always just passed it off as her "faking" it so I would leave her alone. It really upset me....sometimes I would be in tears myself after leaving her room wondering why she doesn't like me. I will try to be more sensitive and ask permission first. Good advice...thanks!

Yes, some Aspies have extreme sensitivity with touch. It is really hard for us to relate to, but what we assume is gentle CAN really be painful for them. Other Aspies can have similar issues with sound, light, smell, taste ... it's like certain senses go on hyper-drive, and everything is experienced with both amplification and distortion.

I have been diagnosed with NVLD, which is not technically Asperger's but I can definitely relate to what your daughter is going through as the disorders are very similar.

As a child my hero was Einstien because he cut the sleeves off his shirts and refused to wear socks, just like me. (: No one knew why he did it, but I did: the seams bothered him!



You need to be very clear with her when she is being too rough for younger children. I remember actually injuring other kids when I was young, or either by throwing tantrums or by getting too physical when "rough-housing." Eventually I learned that I was capable of more damage than I thought I was, but I would have appreciated it if someone had sat me down and spelled the rules out for me.



She might not "just get it" like other kids will. You might need to inform her of rules directly, and you'll need to explain why they're rules. People with autism-spectrum disorders are notoriously awkward and may have trouble with social nuance.



Faking? Your daughter might never fake anything, ever. I know a few ASD people who are obsessively honest, including myself. That doesn't mean people on the autistic spectrum can't lie, it just means autistic liars aren't among any of the people I've ever met, heard about, heard about hearing about, ect. It is possible for a person with AS to lie, or so I have gleaned from my research. I have also read an online article written by someone with AS who claimed that he was capable of lying.



She's not your friend, or your pet. Even if she didn't love you (which she does), it wouldn't matter that much. At least I can't see why it would. If you're this emotional now, wait until she hits puberty and starts ignoring you for real!



BINGO! Stay away from the indulgent self-pity. You, like many other women, have risked your life/mental health to have a child. That means you're tough, and you care about your children more than anything. Use that person inside yourself. Use that person to squash any feelings of doubt or self-doubt or worry or fear that you may have. You'll need to use that person so you can be calm and rational with your daughter, and not join her in tantrums if she has them.

Some general advice:

Your child will be much more vulnerable to predators than other children, and predators can be literally anywhere. Other than that you may have to do some physical therapy activities with your child to help with the sensory integration problems. You can probably find these activities online. As a child, I saw a physical therapist, but the activities she instructed me to do can be found online. I there is a website you can visit with information on sensory processing disorder.(CLICK HERE)

Her sensory problems might get better or change as she gets older. When I was young I couldn't eat bananas without gagging but now I put them in my smoothies all the time. I hated florescent lights and electrical noise, I still do, but now I can tolerate them without becoming irritated or hysterical. Everyone is different, and her sensory issues may never improve, but it is quite possible that they will to some degree. They may not. Einstein, for example, refused to wear socks well into his adulthood.

Taylor Morris talks about Fleece of all things causing her physical pain. That seems odd to me as to most people fleece is soft, but if fleece can cause pain then touch could really hurt.

I'm the NT parent of a grown son with Aspergers. I'm not surprised you worry that you may have contributed to the problems you have with your child. Or rather the underlying social and emotional problems your child deals with. You've probably spent most of the last nine years being told you're to blame for every socially improper act your child expresses. Even the people who won't come right out and say you should be doing something to stop or control whatever your AS child is doing that they consider unacceptable, do the eye slide thing to let you know they consider you responsible for the child's 'bad' behavior.

Stop worrying about it. One thing we often fail to realize is the fact that the AS person has inherent personality traits above and beyond their AS behavior. You're responsible for these and the child's brain wiring only in that you contributed half of your child's DNA. Sure you did things you might have done better with the child--I think that defines parenting. It's a hard job even with the most even tempered, affectionate child. It''s a soul torturing job with a child incapable of accepting or returning affection. The best thing you can do is stop expecting behavior your child is incapable of doing and get help for you, the rest of your family and the child.

Good luck.