More than one child with AS

[Pokey Oaks]

Hi all. I have a beautiful 13 year old daughter with Aspergers. It's been a bit of a tough ride, but we're learning to understand each other more every day.

Since my second daughter was quite young, I noticed 'red flags' that she might have some difficulties. As a baby she was unsettled, and would not cope with anyone but her father and I holding her. She would literally scream at little old ladies who smiled at her in the supermarket! As she got older I noticed she wouldn't look me in the eye when I was taking to her, she was also pretty hyperactive. I had her assessed at age 2 and was told there was nothing obvious, but to keep an eye on things because of family history.

Well she's 4 now, and in preschool. She started off so well, but there has been 9 new kids in her class in the last 2 weeks and she has been hard to cope with since. She's beyond bossy, absolutely will not listen, has frequent meltdowns and I've noticed some possible sensory issues with touch and hearing. Her reading skills are fantastic, and she can memorize a book after one read-through, yet she is still struggling with daytime toileting, and has to wear a nappy at night, and even that gets soaked through. We've decided to have her reassessed as I strongly feel she, too, has AS, or is at least on the spectrum.

Is anyone here a parent of more than one child with AS. I'm certain it's genetically from my side, I have family members with low functioning autism, and a niece and a nephew with Tourettes. I believe I also show some traits, but am not diagnosed. I just feel so sad that my genetics have made life that little it more difficult for my girls. I saw the struggles my eldest had, and now it looks to be happening all over again. I'm just so overwhelmed and exhausted and don't know what to think or who to turn to right now.

 

[rollerskate]

OK, I'm not really sure what symptoms you've seen of it.... The baby stuff does sound fishy... But a lot of the current symptoms you described are actually quite typical for a kid her age. Potty training takes longer for some kids than it does others. Night time wetting especially because they tend to get so into their dreams they don't want to wake up to go potty. The bossiness and stubbornness is pretty normal too. They're starting to get a grasp of independence, feeling knowledgeable and grown up... And you adults just don't make sense! LOL, try to remember how you thought/felt around that age. The best way to cope with that is to try to act more like you're a teammate than her boss. Don't just tell her what to do but explain why, and set up a physical list of rules with her input/help, make sure she understands the reason for each one, and put it in plain sight. Back it up with a reward system. Try to utilize consequences as your negative reinforcement as much as possible since it's around this age time out starts losing its efficacy. Just so you know, without any obvious developmental delays like lack of speech they're not going to even consider diagnosing her until she's closer to six. Be patient and see how she fares in kindergarten. Make sure she goes through pre-k/vpk too as that will help tons regardless of whether she's AS or not. Also realize if she's high functioning she may not even need diagnosis and treatment, just an understanding/helping hand at home. KEEP HER SOCIALIZED. That's the most important thing of all if you think she has AS.

Good luck... And um I hope I didn't seem bossy/authoritative with the above, just was trying to give you what information I know from dealing with my own son. There's a lot I worried about that wasn't things to worry about at all.

 

[Ste11aeres]

Based on my experience as a professional preschool teacher...
*I would say that the possible sensory issues could be an indication.
*I don't know whether the delayed potty ability has anything to do with it.
*The bossiness probably has no connection to AS.
*It's normal for babies six months or older to have fear of strangers to some degree. Very normal. Of course I don't know whether she went beyond normal in this regard or not.
*Lack of eye contact could be an indication.
*So far as I know there's no connection between AS and hyperactivity, but I'm no expert on hyperactivity.

The main reason to wonder about AS is because of your family history.
Also, you know your daughter better than anyone else does.

 

[Pokey Oaks]

Thank you for your replies.

There's no doubt that her 'tantrums' and reactions to things go beyond the norm. It's more intense than it even was with my eldest. In regards to bossy, she is constantly either angry or upset. We have a glimmer of happiness every now and then, but one wrong move and she'll go from 0 to 100 in .25 seconds. My sister, who has 3 children of her own, has said she's never seen anything like it. Her exact words were, "how do you do this? I would have gone to the funny farm a long time ago".

When she's in one of these upset states, her sensory issues are heightened. Just yesterday I bet down and touched her gently on the shoulder to try and calm her down; she turned and screamed running away from me backwards and such a pace that she tripped and whacked her head on the bench top...all from a touch that barely registered to me. She's constantly yelling at us not to look at her. When I say she cried as a baby if anyone else held her, that included other family such as her grandparents, it made them quite upset at times as they couldn't hold their own grandchild.

I guess it's hard for me to explain exactly what she is like, and hard for you to understand unless you see it for yourself. I'm unable to find an appropriate discipline for inappropriate behaviour. She can't sit still for a time out, raising my voice sends her screaming while covering her ears, reasoning just isn't possible. When I ask her why she did something (like push her baby sister off the slide because "she was taking too long and was in the way") she tells me her arms and legs don't listen to her brain. She's also at times blamed her ears for not wanting to listen to me.

My eldest has co morbid ADHD, so I guess that's why the hyperactivity is a red flag to me. When sitting on the mat for a book at pre-school, she has to sit up the back and spins in the spot. They have a calming blanket they have used for her with some success.

I know my daughter, I know there is something up. I'm not uneducated about Aspergers. My eldest has been diagnosed for the last 4-5 years. I'm not asking for a diagnosis here, but support. Particularly from those with more than one child on the spectrum. I don't reel off her symptoms so you can tell me whether or not she's NT, but to give an idea what I'm dealing with, but clearly it's lost in text and I'm looking in the wrong place.

 

[Ereth]

I'm not a parent, so I don't know how helpful my comments will be to you, but you're welcome to vent your feelings here at any time. That's AC's purpose. I am the only known person with ASD in my family. I don't remember having the same troubles as your daughter does (severe tantrums, hypersensitivity to sensory input, etc.) but I did take a long time to toilet train. That's not exclusively because of my ASD though---the primary reason was because I couldn't even walk until I was three. I also read at an advanced level.

I guess I'm sharing all this because I am now twenty-four years old. I didn't know I had autism until a few years ago, but somehow my parents survived. I know you can, too. Maybe you could find a counselor who specializes in ASD in young kids and ask for advice.

Best wishes.

 

[rollerskate]

No one as far as I know is trying to diagnose her or criticize you. All I was trying to convey was that in particular some things you mentioned were within the realms of being normal... This was meant to help comfort you, not deny your reality. You must keep in mind this site is mainly occupied by people on the spectrum. We don't communicate like you do. We try our best... That's why I said what I did at the end of my reply, to help you understand I wasn't trying to judge you or argue... But you've kind of got to meet us half way here too and not jump to conclusions that we're judging you or arguing just because we are so factual in the way we respond. If we didn't care about you or want to support/help you we simply wouldn't share any of our knowledge with you.

Another important thing to understand is that autism is not viewed as a negative thing here. We recognize autistic children and even we can be difficult to live with and understand for NTs, but we don't look at autism as some tragic disorder.

A little about me: Both I and my soon to be six year old son are on the spectrum. He has been delayed in potty training also, and I have had it confirmed through many professionals that it is normal and not connected to AS. The most likely scenario presented has been that he just has a under developed bladder that will catch up in time. I work with his personality quirks as part of his unique identity instead of against them as symptoms of a disorder and mentor him in coping/adapting skills so he can deal with the outside world better without requiring accommodation. I had a lot of the issues you've described with him, but I treated them as normal behavior for a young child and dealt accordingly by teaching him how to modify them.

At four, I've found there's very little that can or will be done for them. They're not old enough for the kind of highly structured environment that tends to make them stand out, and so many of their behaviors can fall in the normal realm for their age that diagnosis is very difficult. That isn't just true for high functioning autism but many disorders that don't severely impair the child developmentally. The standard age for diagnosis with any disorder that isn't severely impairing is six. Otherwise, it's mainly up to the parents and other standard sources of support like day care and pre-k to help the child. A standard children's therapist may also be able to help her learn to communicate her feelings better and give her a sense of having a close friend that understands her when others don't.

If you're having issues figuring out how to address a specific behavior on her part, feel free to ask for advice here. That's probably the greatest thing this place has to offer.

 

[Ste11aeres]

This is actually a very supportive community. You've come to the right place. You have to remember, most of us on this forum are Aspies, so we sometimes have a different style. Often, analyzing things is our way of giving support.

 

[rollerskate]

P.S. To address some specifics you listed in your second message, touching is usually pretty off limits when someone with AS is upset. I usually just let my son fuss it out as long as he's not causing any damage and just wait patiently for the moment to pass. If in a bad spot for that, like a store, I try to get him outside so he's away from the stimulation and in a more pleasant and peaceful environment. I first try to get him to go via calm, repetitive, simple verbal instruction with the reassurance it's better outside, like the kind a hypnotist uses I suppose, and if that doesn't work I may resort to holding his shoulders and guiding him... But fully aware when I put my hands on him it's going to get worse before it gets better. You can also start teaching her how to regulate her emotions better at this age via breathing techniques and visualization, as well as encouraging her to go spend some alone time on her own when she's upset and ensuring she has a quiet, positive, comfortable spot she can go to in such instances. Point out to her how she can deal with disputes/disagreements in a more positive manner, and how much better it feels for her when she does so than it does when she just explodes on the spot.

Be a little lax with the time out and don't expect her to be a statue. Just quiet and stay in the same place.

Avoid raising your voice as much as possible as well.

When she has trouble explaining her actions and feelings, try doing a little guessing to help her. Ask her is it because you feel blank... Is it because you think blank... If this seems difficult for her even, try giving examples of times you felt or reacted or would feel or react similarly. Sometimes it helps to ask them to draw it out on paper in pictures. You still need to help her form the words to explain, but pictures can give you clues on what's going on. Explain the reasoning behind the behaviors you want to see. Like when she said her sister was taking too long and in the way, explain to her exactly why it's not OK to push her and tell her what is a more acceptable way to get what she wants, like asking her sister politely to move, waiting for her to move, getting assistance from a nearby adult, etc. When she says she doesn't want to listen to you explain to her how to exert more control over her impulses and focus, and why it's important to do that. Just... Explain, explain, explain. Autistics tend to be very literal, concrete, technical. We need the details most people don't otherwise things just don't make sense.

Hope at least some of this helps....

 

[Pokey Oaks]

I apologise, allow me to explain a few things.

I'm from Australia, and here we have an early intervention program designed to "catch" the ASD kids early before they start struggling with a school setting. With my daughter showing, what I feel, are indicators, I'm keen to get her seen to as soon as I can. Early intervention help ends at age 8.

If I'm coming of as portraying ASD as a negative, it's not my intention. As I said in my first post, I have a 13 yr old daughter with AS and she is amazing, I wouldn't have her any other way. We've finally gotten her into a school which is more structured, but also allows her to express her creativity, and she's blossoming. It's been a rough road though. She was teased and bullied relentlessly by students and teachers alike, and even excluded from some school activities such as camp because they couldn't handle her differences. It's almost like they were scared of her. I fought for her, and even took it to the state education dept, but to no avail.

So, you see, I'm not upset at the possibility of my second daughter being ASD just because it makes things a bit more difficult for me, I'm concerned because it makes things a whole lot more difficult for her, as has been our experience already. I'm not the only one who has noticed the red flags, her kinder teacher has written a referral to a pediatric fellow, and so the assessment process will begin. I'm aware that some of her behaviors can be very normal for a NT child, and that's why we need to get her assessed, to be sure. If it is AS, I want to arm her with as many 'tools' as possible to help smooth the way.

By coming here, all I really wanted to do was connect with parents who had been through the process, perhaps more than once. I appreciate the advice I've been given, and will take it on board.

 

[Ste11aeres]

You sound like a good parent for her; accepting of her the way she is, yet also aware of the hardships she may face, and wanting to do something to alleviate them.