13 year old daughter just diagnosed with mild ASD

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I am so happy to have a chance to speak with anyone who actually understands how to parent a daughter like mine. For the last 3 months, I was really focused on getting her diagnosed, so she could get the help she needed. But now that she is diagnosed, I just feel angry and scared at the situation. I felt so guilty that I have been angry with her for things that were typically ASD behaviour, so I have tried to become this perfect, calm and loving parent. My 18 year olld son moved out in September because he could not handle her diagnosis. My other daughter is a twin to my ASD daughter, so it is a real struggle for both of us to come to terms with the diagnosis. I have tried to explain to her that her sister does not understand how her behaviour affects people and that her coping skills are those of a two year old and her interpersonal skills are those of a 4 year old, but she says she no longer feels sympathetic because she feels that she gets away with everything because she now has ASD. I find I no longer have any alone time anymore because I spend all my free time at home with my daughters trying to do fun activities and keep our home life peaceful. I do have a boyfriend that I go to his place twice a week and am thankful for the break, but I feel the stress of having an ASD child is going to break us up because why would he choose to be around this? My parents don't even want her over any more because they do not like her behaviours and I feel just so isolated.

I spent an hour and a half crying uncontrollably yesterday with my boyfriend because it felt like the dam burst and I could no longer contain my feelings, but he can only hug me and say it will be better, when really I have no idea when it will get better. And if I talk to my mom, she just says you coped with her all this time and she had no diagnosis, so you can manage now.

I feel like my whole life revolves around my ASD daughter and because I am lenient with her, I have to let her sister get away with stuff too because it would not be fair. I am glad my son moved out because he could not be patient with his sister, but on the other hand, he was someone else that could help me deal with her behaviours. My daughter is taller than me and very strong and when she is determined to keep attacking her sister, I have to use all my strength to keep her away from her. I really feel that the advice in the ASD books is not very useful. The school is always calling me to come and pick her up because she has taken off and they expect me to know what to do with her. Really today I feel like I know nothing about parenting my daughter and I just feel so trapped by the situation.

I was relieved at first to figure out what was wrong with my daughter after all these years, but now that we have the diagnosis, I realize just how much time and effort it is going to take to get her the help she needs. All the books just say to be calm with her, but this seems impossible.

Welcome.

First off, did your child get diagnosed through the school, or medically? Assuming your child is in public school, they are supposed to help you figure her out. If does not have one, your daughter needs an Indvidual Education Plan (IEP) and a BIP (Behavioral Intervention Plan) and also a FBA (Functional Behavioral Analysis) needs to be done so they know what to put in the BIP. If they are making you come pick her up, then they should know she needs this done if they are aware of her diagnosis. They should not be shoving all this on you, when you have barely become aware of what is going on, especially.

I am going to be a little pedantic, as I typically am. The diagnosis is not the issue (your mom was right about that) the issue is all the stuff the diagnosis explains/helps you understand. You son didn't move out b/c of the diagnosis, but because he cannot deal with what was going on, yes?

I think a lot of what siblings have to deal with is unfair, but that is how it goes with any issue that one child has that the others don't. You absolutely can hold your other daughter to different standards. If you had a blind child, you would not get your other child a seeing eye dog, just to be fair, right? You do need to make sure you don't overstress your other child, or neglect her, but you do not have to have the same standards of behavior when one kid can follow rules and the other can't.

I am going to stop with this for now, b/c others will chime in, and there is a lot going on, obviously.

You say hers is mild but:

That doesn't sound mild at all. That sounds low functioning. How can she be mild?

ASD mommy ASD kid, thanks so much for your reply and I love your analogy about not getting a seeing eye dog for a child who isn't blind - what a great way to look at it. I will have to learn that new way of seeing things. With twins, you are always conscious of trying to keep things fair.

Also, she did get diagnosed through the school psychologist and they are now working on her IEP and safety plan and another thing that will follow her through school. They have also applied for her to get into an ASD program at high school next year, but there are only 20 spots in both schools for all of the high school grades, so I doubt she will get in.

League girl, yes she was diagnosed with mild - so mild they almost missed it and had to keep testing her. It is because she is very average cognitively (she gets really good grades except for math), but when dealing with other people, this is what makes her seem younger. She is very articulate and comes across well except when she is upset. Then she reverts to toddler and preschool behaviours.

So it's only when she is upset she goes that young, okay. As people say, conditions fluctuate depending on the day and then there are some who are borderline meaning they go from having it to not having it or they have impairments but not enough to quite have it but they are impaired by it so they are diagnosed with it anyway.

I'm guessing she would have Asperger's if this was before May 2013? Is she close to normal or what because you say she was so mild they almost missed it and they had to keep testing her?

I am guessing she can talk and take care of herself and people may not even guess she has a disability if they saw her or looked at her and then when she gets her moments, they may think something else but not guess she has a disability?

Why do you doubt she will get in the program?

I absolutely echo what ASDMommyASDKid said that treating your kids fairly does not always mean treating them the same.
And while violence always needs to be addressed I would keep an eye out for whether your dd's nt twin is deliberately pushing her sisters buttons at times cos that will need dealing with too.
I think you need to try not to let your guilt at not realising sooner affect how you deal with your kids going forward. It's good that you recognise this is happening but you can't change the past. And I think every parent has dealt with their child in less than ideal ways before they were diagnosed (and, certainly in my case, sometimes after too). No-one is perfect. All we can do is our best.
Are there any parent support groups near you? I have found the one I go to fantastic and it's great to get advice from other parents for strategies that work in the real world. I agree that sometimes the advice in books is generally 'stay calm' and 'ignore' and there are certain situations where you have to act.
It might not feel like it now but it will get better. The more knowledge you are armed with the more confident you will be in dealing with any behavioural issues.

I don't know who told you that, but if she was diagnosed at the level of Asperger Syndrome (High Functioning), that's an outrageous exaggeration. We may as youngsters frequently be mystified by the reasoning behind common social structures and expectations, but we are not stupid. A High Functioning Autistic is perfectly capable of understanding what is considered socially acceptable and what is not. Do not ever use AS/HFA as an excuse for misbehavior.

At that age, I did frequently question the rationale behind the standards of behavior my parents expected of me socially - sometimes they managed to communicate it in a way that made sense to me, often even when I understood it, it seemed pointless and silly, but the bottom line was, I behaved the way they told me to or I got punished, like any other kid. I didn't have a diagnosis to use an excuse back then, so they didn't cut me any slack and frankly, I'm glad of that. What didn't kill me made me stronger.

That said, I will tell you that having grown up without that diagnosis (I wasn't officially DX'd until nearly 50), I strongly object to the use of the term "mild" being applied to any form of autism. It diminishes the seriousness of the handicaps we live with by making them sound inconsequential. The truth is, IMHO, there is a big distinction to be made between the notion of "mild autism" and "High Functioning." Just because we are better equipped to hide the effects of our disability does not mean it's less disabling or less painful.

While I don't believe you should allow a High Functioning child a lower bar in terms of acceptable behavior, I do think it's important that you become familiar with the kinds of sensory hypersensitivities she lives with, so you can understand how that leads to miscommunication, social alienation and often impaired self esteem and emotional imbalances. It all stems, like a chain of falling dominoes, from the condition of having LIFE "turned up to 11" all the time, day and night, 24/7.

League girl - yes she does have what was called Aspergers and people have always felt that she has behaviour issues - more so since she changed schools last year and did not do well with the transition.

Rabbers, yes I am trying to join a support group that meets once a month, but I hope it will be enough help. And yes I am aware that her sister pushes her buttons too. It feels like I have to constantly referee them and have even had to jump out of the shower to deal with their altercations. I hope to feel more confident as time goes on - I feel like I have to learn a whole new set of parenting skills and I realize that I won't learn them overnight.

Willard, thanks for your perspective, as I do realize she knows she is getting away with things now that she has the diagnosis. I guess as we come to terms with it, we will all learn to accept it and learn ways to deal with it better. I think if it was only my one daughter, I would have an easier time than having teen twins. Also, she is aspergers or high functioning, but if her coping skills are of a two year old, then does she really know what she is doing wrong when she is really struggling emotionally?

My feeling is that while my ds is able to understand how he should behave sometimes things get in the way of that. This is especially true if your child struggles a lot with theory of mind/empathy and is very impulsive. I think you need to have goals and expectations appropriate for each child. But that doesn't mean letting unacceptable behaviour go unchallenged.

triplemoon18 - I think you'll find that a lot of the strategies you need you will have already come up with yourself. But sometimes just one simple idea or tweak of how you do something can make a massive difference and you'll be wondering why you hadn't thought of it already. You also have 2 13 yr old girls. I am remembering when me and my sister (both nt) were like that age (not twins but v. close in age) and we both fought like cat and dog so likely their age and hormones are playing a part too.

Can she go another room to calm down if she gets too upset? Like go to her room to relax or go outside for a walk to calm down? Can she take any breathing exercises if she is in therapy so she can be calm and learn to know when she is getting upset before it escalates? Is there anything she can do to help keep her calm in a situation? Now that you know she has an ASD, now it's time to help her figure out her own feelings and know what to do with them before they escalate and help her find strategies when she senses she is starting to get upset. Does she have any anxiety by any chance?

If her twin sister is intentionally pushing her buttons, I think you should put a stop to it because I think it's unacceptable. You wouldn't allow your normal child to push her brothers buttons would you or let your son push his sister's buttons?

I agree with a lot of the points being made.

"Getting away" with behavior may be an imperfect use of language. There are things I do not punish that I address in other ways. There are battles I fight and there are battles I defer, until we have better understanding of the fundamentals.

You have to see where she is in terms of both impulse control and understanding emotions and emotional control. Hold her accountable for what you know she has control over, and work on what she doesn't.

Labels like "high functioning" are a guideline and a guideline only. In my experience, unless this has changed with the new DSM, HFA to the school only means "smart" or at least not cognitively impaired impaired. That is also how I interpreted what you said. The new DSM was supposed to have separated intelligence out when assessing severity but I would not assume universal application of this.

For example, my son has a lot of what they call splinter skills. When it comes to things like math, reading fluency and pattern recognition and that sort of thing he is a genius. I am not saying this to brag,but to illustrate. He has quite a few deficiencies, too. Typically the parents here will throw around a rule of thumb measure for Aspies and HFA kids that emotional control is about 2/3 or so of that of a neurotypical kid the same age. My kid is at about 1/2. His social skills are at less then one percentile. So in some ways he is not high functioning despite the label.

So when you say it is "barely noticeable" I am going to assume a few things which you can correct me on, if I am incorrect. My guess is that b/c your daughter is smart no one at the school thought to consider autism (being a girl tends to make it hard for people to consider AU, also) but I am going to assume the behavioral and social issues were always there, although maybe to a lesser degree. The school doesn't care about the social issues, unless it translates to bad behavior and either the behavior was not severe enough until recently to address, or they mislabeled it as being "bad."

So the question is, what is new and what is not? How had she been doing up until this point? Is the violence towards her twin sister new? Is it a button pushing thing, as mentioned? Does she maybe feel like her sister should be helping her/protecting her socially and she isn't, so she is mad about it? Does she not have enough personal space b/c she hadn't needed it before?

I guess what I am getting at, is autistic people have reasons for what they do, even if they don't/can't communicate what those things are. If you can discover what the specific issues are, it will be easier to come up with solutions.

Thirteen is a tough age, so I am not going to say it will be easy, because it is hard on NTs too at that age. The social rules are hard even for them, so if your worst issues are relatively new, social failure and bullying are very good possibilities. If she has recently had new higher executive function/sensory requirements at school (changing classes, paperwork, noisy hallways) that is a good place, also.

My daughter is a high functioning autistic and I have decided not to tell her because I do not want her to be labeled, and for her to use, or anyone allow her to use that label as a crutch. I was very upset when I began suspecting autism when she was 3, and fairly resigned when it was confirmed at age 6. Every child is different, whether they be aspie, on the spectrum, NT, dyslexic, whatever. We all have our lessons to learn and problems to overcome. My daughter as a beautiful and perfect individual just the way that God made her. I have devoured everything I can about aspergers and autism and have gotten great advice and insight on how her little mind works and how to deal with certain situations. Every year I make my own "operators manual" for her teachers and have a little conference with them so they have a better understanding of her quirks. I don't like the phrase "special needs" I prefer think of it as "special consideration." Learning how she works and what to do has significantly reduced the number of problems/misunderstandings and we rarely have problems with tantrums or breakdowns anymore. She wears little pink ear muffs (the kind you use for hearing protection when shooting) whenever we go somewhere that is noisy or may have unexpected bursts of loud noise, and I know the signs of when she is becoming scared or agitated, and we remove ourself for a little break so she can adjust. Regarding your two girls, to say that one child is getting away with something is simply not true. Every child is different, you cannot treat children the same because they are not identical robots. What works for some, won't with another. Quit grieving and focusing on the diagnoses, embrace their differences and individuality. Its not fair allow the girls to compare or measure themselves against one another. Take each child individually, at whatever level they are at and bring them forward. We are all just trying to take the perfect little gifts we were given and do our best to equip them with the skills they will need to be the best grown ups they can be.

Rabbers - You are right about some children struggling with theory of mind/empathy and being very impulsive - my daughter is exactly like this and I am trying to adjust my expectations.

League Girl - making my daughter go to another room when she is upset is not working for us. We live in a two floor apartment and usually arguments occur downstairs and if I try to get her to go up to her room to calm down, it is like moving a mountain. I thought if I could just get her to go in her room and play her video games, she could calm down, but I have since realized that segregating her makes her feel worse. Last Friday, she started crying about me wanting her to spend time in her room and how she wants to see me because we mainly have the weekends to spend together because of work and school. So now we are reading books together in my room and that is working for now. It seems my daughter has to decide if she feels like hiding in her room and if I put her there, it just feels like this huge punishment and makes things worse.

ASD mommy - I like what you said about choosing the battles you fight and letting other ones go until you have a better understanding of the fundamentals. That is what I am trying to do with my daughter. I know she has huge problems with emotional control and I am trying to help her with this. Her school spent last year thinking she was a huge behaviour problem and I guess they are having to come to terms with the fact that she is ASD now and needs help.

As for what are new behaviours and what are old? I guess there were always a lot of behaviours, but I wasn't so focused on them. When my son lived there, I had 3 teens all acting out and I felt outnumbered. Now that he has moved out and my girls have their own rooms, it actually is a heck of a lot calmer in my home. I guess I am stressing myself out because I am trying to be the most patient and helpful parent, when before I would have hid in my room and did my own thing. I was able to do this before because we had the internet before. Now we cancelled our home service because my daughter almost got charged for making threats on the internet. It was a huge motivator to get them to do chores, etc. But on the other hand, it caused a lot of fighting about whose turn it is on the computer.

I realize that I am expecting some perfect harmony, but it is silly of me because of course teen twin girls are not going to sail through life being super sweet to each other all day long.

Boomomma - you are right that I should quit grieving and that we are just doing our best to equip them with the skills they will need to be the best grown ups they can be - the problem is I am wondering how to best do that and I feel like it has to happen over a period of weeks, not months or years.

Triplemoon18, regarding the segregating your daughter to her room comment, it's important she realizes that she is becoming overwhelmed and start removing herself from situations. You won't always be there to recognize it and intervene. Sometimes it's not about removing them completely as much as it is just finding a quiet corner or stepping away into another room long enough catch a breath and compose themselves. When she is calm, and before we reintroduce ourselves back into the situation, we talk about what happened and what is the appropriate response. It takes time, lots of little adjustments all the time, but it's working. You can't push an aspergers kid, it's like pushing a rope and you end up with a big tangled mess. Try gently pulling instead. This discovery was the biggest ahhha moment for me and has made the biggest difference in the relationship between my child and I.

Triplemoon, what you are going through is hard. I am glad that you are fighting for your daughter. And I agree with boomama that gently pulling aside works best. I also do programs with kids who have autism of all types, and I saw one mentor doing something the other day that was awesome... talking quietly to a kid afterward to reinforce their lesson of what they should have done quietly, rather than in the moment.

You are doing something so important. Speaking for myself, I was not diagnosed until two years ago, after having no friends in high school, few in university, and a string of jobs. Getting help and advice for yourself now might help mitigate that for your daughter.

Boomama - that is so true about gently pulling, so it doesn't become a tangly mess. I am not sure how I will get her to recognize when she needs a break, but we will figure it out eventually. The problem is when she is overwhelmed, it happens so quickly and then you can't get her to do much of anything. She really doesn't like talking about a situation once it's over. And in fact, she forgets most of what happened in the heat of the moment.

Managertina - thanks for your kind words of support - they mean a lot to a struggling parent.