Girl with high-functioning, light form of autism

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Hi all,

I am a father of a 5 year-old daughter, who was diagnosed with high-functioning autism when she was about 3 1/2.
The symptoms were delayed speech, repetitive moves, but also delayed walking (she first walked when she was 18-20 months old)
We started early intervention, basically through speech therapy programes and also at the age of 3 she went to a daycare school. Here in Greece, is is not easy to find the early intervention programmes widely available in the US or other countries.
Nevertheless, two years after the diagnosis she has improved considerably. Now it more clear for us to see what autism is and what it means. Her speech is quite normal, although she often repeats words or phrases she finds interesting or amusing.
She still finds it hard to play with her peers, although she wants to but does not know how to communicate properly with them. She does much better communicating with adults. She still sees things with the edge of her eye and she does a lot of aloud thinking.
Lately, she started going to the toilet even when she did not want to pee. She goes at least 20 times a day when we are at home, and sometimes she gets anxious when we go out to restaurants, cafes or for a walk, because she thinks that she will not be able to go to a toilet. However, when we explain things to her she accepts it more easily and does not ask for a toilet.
We feel that she is slightly immature for her age...she often laughs loudly without reason, shouts and screams (when she is happy and relaxed). We do not have any tantrums or anger outbreaks (95% of the time she is very happy and cooperative)..
As parents, we are now going through a phase where we are trying to learn as much about autism as possible in order to help her. We have decided not to go for a 2nd child, since the 5-8% possibility for a second autistic child we thought is rather high.
We are anxious and sceptical of the future and how our daughter will develop. Will she be able to control her anxieties as an adult ? will she have proper education ? the questions are many, but one thing is for sure: I would not exchange her for any "normal" kid in the world.

any advice is greatly welcomed!
very happy to be here
Pinco

Welcome to WP! It can be scary thinking about what the future might hold for our kids. From the sounds of it you are doing a lot for her already and that will be a big benefit to her. As for the potty thing, I would probably plan out in advance where there is going to be a potty whenever you go out. Knowing that should help relieve her anxiety and maybe after a little while she will come to understand that most public places have potties. However, if you are going to be somewhere that there is not going to be a potty available, you probably want to talk about that before hand and make sure she goes before you leave. I'd bet it is something she will get over soon.

My kiddo does the same thing with the bathroom. It was crazier when he was little, especially the year after potty training. When you can't tell if they really have to go or not. Now that he is older (7) I only see it if he has been "off" sensory wise or has been particularly anxious about something. He understands it a lot better now and tries to differentiate between being worried about the bathroom and actually having to go to the bathroom. He frequently stops himself and say, "I don't really have to go, but I feel like it." He seems to understand what the difference is sensory wise now. He works through his anxiety with deep breaths, identifying the thing causing the anxiety and thinking about what the "whacky thoughts" are and what is actually true. "What if I wet myself?" vs. "I haven't wet myself since I was really little, I will be fine." He needs some help sometimes coming up with "What is" instead of "What if" but seems to be doing great with it.

When he was little and got into repetitive bathroom mode, I would say "Okay, well you just went, so let do this for a while and see if you still have to go in a few minutes." Then we would do something to hold his interest for a while and he would forget about it. Other times he would bring it up again, and then go. Letting him go whenever he wanted seemed just to feed the ritual and he would get stuck in it. Having little breaks for longer and longer times seemed to help redirect his thoughts away from the bathroom.

If she is anxious about if there is going to be a toilet or not, maybe make a social story about it. Matter of fact explanation of what places have toilets and that if you need to go to the bathroom, you can find a toilet, etc. When she starts getting nervous when you are out, just refer to the story, "Remember the story? What do you think the story would say about this?" She needs the reassurance, but if she can start to reassure herself by remembering the stories when she is anxious, it will help her not be as dependent on others to tell her everything is ok.

It is much easier when they get older and are mature enough to think through anxious thoughts. It gets better!

The way I look at it is NORMAL is just a label like AS, unfortunately normal is the higher percentage and children/adults with AS have to navigate around the rules that are very difficult for them.

Regarding the toilet problem is she worried that she might have an accident, maybe she doesnt like how it feels, and she is trying to pervent it. How old is she now? If you can show her what to do in case she does have an accident, like a change of underwear in the bathroom, or clothes etc, and always make sure there is toilet paper, or a basket where she can put her soiled clothes in without feeling bad about it otherwise she will try to hid it as she gets older.

The important thing here is to let her know that its ok to have an accident, it ok not to know how to fix it without adult help, and if she needs help to ask for it. If its at home she can follow the rules so to speak and she will be able to use this in other situations. If she is very young now she might not be able to understand what she needs to do, but you need to keep reinforcing the above and hopefully this will help in the meantime, or when she gets older . If your daughter is continually going to the bathroom to preven,t maybe she feels bad about having accidents this can happen because she is has AS nothing to do with how you parent her but the best way to help is as I suggested above. Explain, give her an alternative, have a solution in place as a prevention that meets her age.

This is most likely to do with anxiety if you can help her when she is young as an adult it will benefit again not sure if it will be sucessful.

Welcome to WP and good luck with your daughter! I hope everything gets better and easier down the road!

I wish the best for you and your daughter.

My advice would be to get to know parents your child will be, or is going to school with. If the parents like you, they are more apt to help their kids understand your daughter.

Cheers

Thank you all for your wishes and advice. She is 5 years old, when we tell her about the toilet problem, she seems to understand it but can't help it. However, when we go out and she starts asking for a toilet basically we change subject and talk about something else...this helps and she forgets it for a while.
I am sure that at some stage she will get over the toilet problem and develop a new repetitive behaviour and so on. And hopefully as you said earlier, she will learn to put some thought in why she is doing this.
What I know for sure, is that it is a constant fight. I feel much more relieved that I have found this forum that I can talk openly about the ASD.

Lorna, you are right about the parents in my daughter's school. However, this is not easy at all, parents (at least here in Greece) are so happy and proud of their "normal" children that seem to disregard that kids with special abilities also exist in this world. 2 years after the diagnosis, I still have not said anything about this to any of my friends. They probably think that my daughter has some communication problems and that's it.
Opening to the world is another battle we have to face. I bet that most parents here would not allow their kids to play with my daughter, not because of her behaviour but because they are pre-occupied that their kid(s) may be affected somehow.

About the loud thinking what is your opinion ?
Do your children do this ? My daughter basically starts this as soon as she wakes up and ends up when she goes to bed at night, she expreses real stories and past experiences, not imaginary things

many thanks again for your help and support
P.

The toilet thing could possibly be an obsessive compulsive type of thing brought on by stress. Has she ever had an accident and got upset about it or someone else got upset? It could be related to something that happened or it could just be a fear or anxiety that she developed for no reason that is obvious. It might help to understand her anxiety, make note of time she does it more and when she does it less. Its good to try to redirect her but try not to put too much pressure on her about it or make a big deal about it because this will just increase anxiety and make her fixate more. My daughter has a lot of rituals, things she has to do or touch....more like OCD. I typically dont make a big deal or even mention these things as she will typically change her rituals regularly and as long as they are not interfering with life then there is no reason to try and redirect to help her stop. This sounds more like, for you, this is interfering with her life, like you cant go out, ect. Would it help if you brought a baby toilet with you in your car and told her that you have that "just in case"? This might alleviate her fear of having an accident because she does not get home in time.
Also I understand be exiled by other people because your child is different also my children's autistic behaviors are more apparent now that they are older. When they are younger people just think they are acting silly or acting like a small child and accept things more even if it may be a bit odd. When they get older it tends to stand out more.
If you want my opinion Id ignore the people who refuse to understand and try to educate those who are more open to understanding.

She never had a "toilet accident", and neither of us has any particular issues with the bathroom. I don't think this OCD with toilet has to do with her being afraid of having an accident.
However, I remember that from the age 2, she did not want us to go to the toilet and she would get very angry everytime me or my wife would go into the bathroom and close the door.
I believe that she is stressed because we moved out of town to a new house and she expresses is that way. She does it only when she is at home...when we go out it is much more controllable.
The doctors have warned us that these rituals are common and when one of them ends, another will soon begin.

Up until June, every single morning before daycare, she was very anxious to draw a figure of mother and father with green trees, yellow stars on top etc...she would staple them together and put them in her bag...same ritual for months...

My son doesnt have rituals as such, but he will repeat obessively the same thing over and over or a number of different words, phrases, for a long time, then he will replace it with something new, it drives me crazy he has always been like that he is 13yrs. I can't recall if he had rituals when he was younger.

You seem to have worked out why she behaves in that way, I cant get my son to stop repeating we/he just live with it. He does get obessessed about things like when he starts something new, he was reading and took the book with him everywhere, he now likes playing pool and wants to do it all the time, that has been replaced with going on line with his playstation we were away for 2 days and he was so anxious to get home to go on line. This will go on for a while then he will get bored and replace it with something else. I wish maybe that he might start cleaning the house and getting obessed with it

Welcome to WP. I am myself the mother of an 11 years old Aspie. She did not have speach or walk issues, but she had hers. I would recommend you to take your kid to a Center specialized in autism, and get a behavior modification therapist. A therapist wil help her with the anxiety and interaction problems, and will also help with hundred other issues. I wish your family all the best.

Deleted my first post because I decided that information wasn't as likely to apply as I had thought the first time around reading. And it was kind of personal.

I will say that all kids go through strange phases and obsessions, and AS kids a little more so. In my experience, you just roll with it and don't make too much out of it. Play along. And then they move on to something else.

Do take potty requests seriously. Different kids have different needs in this area, and I think you are better spending too much time in bathrooms, than too little.

I think it is anxiety and I think the outlet/expression of the anxiety will change over time.

I have extreme insomnia. Sometimes when I lay down I have anxiety about being able to fall asleep. This causes me to feel like I have to pee (in fear that I will get almost to sleep and have to go which will wake me up), so I go pee and then lay back down. Then 30 minuts later I feel like I have to pee again-it happens over and over. It is caused by my anxiety over the insomnia I believe. So your daughter is probably having something similar. Perhaps at one time she was disrupted by the need to pee, so now she wants to avoid the anxity over the disruption by proactively peeing.

Boy, I hope this makes sense!

I am sure she is anxious over something, I just wish I knew what this was. But then again, is there point trying to find what causes non-stop anxieties to AS kinds ?
sometimes it is obvious, sometimes it is not.
We only just passed the stage where she was referring to herself as "she"....for a couple of years my daughter was saying
"she wants water", "she likes this park" etc...
And finally, within a few days, she started using "I"....we were quite amazed.

One comment for liloleme: At some stage I thought that for light forms of autism, it gets better as they grow older, however I am not sure anymore, because now e.g. I can claim that she is just a shy kid, but I cannot say that for her when she grows to be a teenager.
I just wish that her rituals and repetitive behaviours are controllable and allow her to live a normal - or near normal- life.

She's young and it is impossible to say where she will end up. You have discovered her autism early and that can increase the chances that she will learn good coping mechanisms so that she can function well. From reading this board a lot, it seems like the repetitive behaviors are often directly related to anxiety as has already been addressed here. What is very likely to improve as she gets older is her ability to communicate to you the things that cause her anxiety. Right know she probably has a very limited capacity to do this. Focus on communicating with her about what bothers her. Do this by talking during times when you are both calm and quiet. Reflect on situations that didn't appear to go so well for her and try to dissect them to discover what is at the root of her feelings. I have to repeat something I read (can't remember where now): Behavior is communication. It's just a form of communication that can be very difficult for us parents to interpret correctly. It's a big guessing game and it takes a lot of trial and error!