AS worse in teen years?

Post Reply New Topic

As the parent of a 16 yr old with AS I am really struggling to understand right now. I don't know if her issues are getting worse or just becoming more apparent because expectations increase as she ages?

She is 16 and just diagnosed last year. Although I am not diagnosed I have AS tendencies myself so for a long time I didn't realize anything was wrong, then I always defended her and just said she'd grow out of it.

I encourage her imagination, interest in fantasy, playing with toys etc. I want her to be able to be herself. But what is hard is when she's so mean to me and has these tantrums when no one is looking. It is so hard when nobody in our lives believes that she a.) has AS at all, it's just bad parenting on my part, and b.) a perfect angel who would never insult, scream at, hit or threaten me, I must be making all that up for attention.

I'm bad at social stuff so very little support. Would just like to hear if anyone has dealt with similar experiences.

My son is 12, so I can't say anything about the age - but I've had that experience in the past. I think different developmental stages are difficult for our kids because there is so much change, and change is very hard for them.

You might want to check and make sure your daughter isn't being bullied at school. It is not uncommon to find out that bad behavior at home is a result of them "holding in" all their stress throughout the day so they can be "perfect" at school.

I am very sorry you are going through this, it must be very difficult with a teenager. There is an "index" of posts at the top of this board that has collections of threads on different topics - one is violence and another is meltdowns. While girls do present differently than boys, and many (but not all) of the posts are about boys, I think they may be helpful to you.

I do also encourage you to find support. There's plenty of it here: you can post any specific question you like and it will be answered both by parents and by autistic people - and sometimes people who are both (it is important to remember that sometimes people on this board can be blunt, but that is not always a bad thing.) However, you might see if there are local resources - the place that diagnosed your daughter may be able to recommend an advocate to bring to the school to explain what is going on.

Hang in there!

Temple Grandin talks about how her sensory sensitivities got so much worse when she became a teen. Others here have observed that life with their AS child seemed to get much more difficult during and after puberty hit. There are so many things that could be causing her difficulties. At the same time she is probably less willing/able to communicate her troubles to you in a reasonable way. A psychotherapist may be beneficial for her at this stage.

Neither of my kids are teens yet, but I have been repeatedly advised to make sure their diagnoses stay in place (my daughter is mildly impaired at this point and could probably fly under the radar) until their teen years hit. This is because so many before me have experienced an up-tick in symptoms during teen years. I think it is a combination of hormones and increasing expectations that they may not be able to meet, coupled with neurology.

I know how you feel, my daughters only 5 but she is good at hiding her AS. I am having problems with inlaws as they dont believe me that she has AS, therefore I have failed at being a mother, I am dragging her to Drs and imposing this label on her, Im just making it all up for attention etc etc. When in truth I have struggles with her everyday, but she can hold it back at school or when visiting family. They even went as far as to say "well shes much more relaxed at our house thats we have no problems".....!

I suppose we have to take it in a positive way, you and your daughter work hard to deal with it, if others dont see it, its to your credit, accept the compliments when people say how lovely she is and how they cant believe she would hit anyone, I know its hard though :/ I get the same, people think shes an angel, and she is until she gets home after holding it in all day and then shes pushing, hitting, kicking, answering back and spitting!

Im not looking forward to her teens, she like a teenage already!

Someone linked a study here that I found very interesting - http://www.wrongplanet.net/postt224282.html

The gist of the study is that there are three major correlations in aggression with autism: how rigid the child is, how old the child is, and how much money the parents make.

My son (and his father, BTW) fit the profile outlined by this study exactly - he was incredibly aggressive when he was younger, it peaked at about age 9, and he became progressively less aggressive until now, where he shows very little aggression (sometimes we get the odd remark, and maybe fist-shaking, but it is rare.) He has started bursting into tears for meltdowns instead of striking out - which is good, because it's earning him sympathy and support at this point. I think that even if a child doesn't follow the age range listed in the study, it may well be possible that they follow the same learning curve.

I wish I could say that we tried interventions that worked on the aggression, but I think it was largely a developmental pattern that had to run its course. That being said, I did notice two things: last year, DS was REALLY REALLY working hard to not be aggressive; he was clearly putting most of his time and energy into managing his behavior and following the techniques we and his therapists had taught him. This year, he just isn't aggressive. It is totally different.

I will agree with the study where it says that maybe interventions to improve flexibility have an effect on aggression - DS has also become much more flexible than he was when he was at his most aggressive.

So, we do work on flexibility, but it has been a long and subtle road (and sometimes one I didn't even realize I was on.) For instance, I didn't realize until recently that our approach to Halloween was an exercise in being flexible.

DS was one of those kids who ALWAYS wanted to dress up as his special interest - we were constantly negotiating when it was appropriate to wear a costume. I created a "rule" for Halloween: no licensed characters, but if he could draw me a picture of what he wanted to wear, I'd make it into a costume (I have some costuming skills.) This caused us a lot of stress, and DS was never happy with the end result (it would be "bumpy" or "not work right") but he'd wear it. I think this actually helped him realize that he was ABLE to wear other costumes and that the costumes didn't have to be factory-perfect for Halloween to keep happening.

I think in the end it was the right choice, despite the fact that Halloween was always filled with meltdowns (not just because of the costume, mind you.) We did this sort of thing regularly - when I saw DS digging his heels in, I would try to make a tangential change - not a complete change - for instance, he's still in a costume that he chose, just not his preferred costume. Or he isn't eating dinner on the dark blue plate, but the light blue one. Or he doesn't always get to pick the "family" movie. I did make sure to only change ONE thing at a time whenever possible, and not to overload him with variables. It didn't always work out well in the short term, but I think big-picture, it helped. (I also think that some of this would have happened more naturally if DS had siblings. When you only have one, it's easier in many ways, but there are learning opportunities that you miss.)

I think, as a rigid kid, he forgets that there may be a plan B, C and D if plan A doesn't work out. I can understand where if plan A goes awry and you see it as your only option - that could cause you to lash out.

As for the immediate things we did that helped our son - I've written nearly a dissertation (more so, even, than this post.) You can find those posts in the Parenting Index. I completely understand about them not believing you; it happened to us, too.

Thank you so much for all of your responses. I just am at my wits end so much lately and feel like nothing is ever going to get better. My child resists what I say about absolutely *everything* and won't do anything for herself including hygiene, etc. On top of that she thinks she is perfect and blames the world for all her problems. I'm so tired of being treated like I'm a monster for wanting her to do things like being reasonably clean. And I'm tired of her putting on the act around family, friends, etc. so that they think I'm a monster too. It was never this bad when she was younger, I think because she kept quiet but now wants to argue all the time. It was one thing having a child who wouldn't wash but an entirely different thing having a teenager yelling about why she shouldn't have to :-/

I wish I had more time right now, because here is what I see, and it is an unfortunate combination:

She is acting AS (hygiene issues, blaming the world and not seeing her own contributions to the conflicts, meltdowns) AND acting like a teenage girl (being mean to mom and refusing to believe mom could be useful or insightful in any way).

Given what I know of teen girls and B, I don't know how you gain enough trust and access to help her with A. My ASD child, also a teenager, is a boy, and boys don't bring B to the table like girls do (my NT girl child is 12). I feel I have the protocol for helping with AS issues, but they rather require that the child wants help from *you,* and I don't see that happening with a teenage girl, in most cases. Girls get this instinctive need to totally disassociate from mom and, while they still clearly need mom, they fight it with nearly every part of their being. Make any sense?

What are your options for outside assistance?

Sounds very like my little girl, except older. One day she will be over the teen years and it will be you she comes to, she will realise all that you did for her and when she has her own children she will have a great example of how to be a mother. All the others that she puts on an act for cant be as close to her as you are, it seems like shes being nice to them and not you but its just because she knows you will always love her and she can completely relax around you.

Im sure she will thank you for it one day

The only thing I could think of is if you had a 3rd party like a "cool aunt" or something tell her these things instead of you. Exasperating as thjat might be, it might be better received at this point then you two constantly going round and round on it.

This is my first posting. My daughter is 17 1/2 and has PDD-NOS only we just figured this out last week. The story is long. My thanks up front for anyone who bears with me here. I really need help! I have problems with the medical community that failed us (just found out she had this diagnosis but NO ONE told us - since 2008) and I am now in therapy to deal with my own sadness, anger, regret, etc for not having known this earlier and the incredible loss from her being raised without this awareness and thus not validated and never getting the right kind of help or support when it could have been so helpful. I am trying to make up for lost time and am frightened I am losing her for literally running out of time until she is 18 and we will have no say in her medical care. To come here and see I am not the only mother of a teen girl who is doing what all teen girls do naturally but having it be so frightening because she is so emotionally and socially immature is helping me feel less alone. I have been incredibly alone in this journey. I have known all along something wasn't right and have had her before experts her entire life. But her dignosis was stealthy. She has so many strengths. And we had incompetant care. And now it seems as though her therapists all think they should treat her in isolation as an adult. The care is not comprehensive nor integrative although they all claim it is. I am filling in the blanks pushing for the right kind of care and asking them to be competent in her care - to speak with each other (Psychiatrist to Therapist to Primary care Manager to Neuro-Psychologist). It is so hard and I feel so lost and worn out and anxious. Why do I have to figure out the root cause for my daughter's disturbance and tell THEM? Isn't it supposed to be the other way around? Aren't they supposed to to diagnose her and then inform me?!? Like I said before, I have a therapist now and this will help me regulate my own emotions to be the healthiet person and therfore best mother to my extremely needy but in denial daughter.

Her issues are all in the social arena - and in communicating emotions. She is brilliant intellectually and also a brilliant actress hiding her deep dark secrets from the world. She has been succesful in acting normal around teachers, coaches and other adults but the truth lies in her, at home and with me. The truth is in her, of course, but she is confused and in-validated and has no words to express her deep pain so she cuts herself. Therein lies the truth - she is dealing with unberable pain with no words and takes it out on herself. Since her Verbal IQ is off the charts a lot is expected of her. But her non-verbal congnition is just average and this uneveness makes for a daunting internal anxiety that unless she is in the right place/time/environment she cannot be successful and her brilliance does not show in grades. The smartest girl in the class gets c'd,d's or f's. Invalidated. Misunderstood. Frustrating teachers, her mother and herself. PAIN. Friendships are all surface and she holds everyone at arms length - moving away from them before they can ditch her. She trusts no one - not even herself. She is existential in her thinkng - has an anxious avoidant attachment.

All of this is coming out in individual therapy and by me violating her privacy by getting the doctor's notes, reading her diary, looking at her facebook messages, her notes she keeps in her yahoo account and by her individal therapist breaking her confidence by letting me in on some of her secrets.

I hesitated to be so stealthy and invasive in going through her room and her private life but I will not apologize for digging deep to figure out what exactly is causing my daughter so much unbearble pain. It is this. She has a neurological disorder and her entire life everyone (including her) has expected her to do and be what she is incapable of. Four teens took their life in our High School in the last 2 years - three in a 7 months timeframe. All were the sons of career military fathers like my daughter is as well. Their mothers went through their rooms, facebook, etc after they were gone lookng for clues as to what went wrong, why did their son give up on life - what did they miss? I DON'T WANT TO BE THAT MOM! Teens hide stuff. Military teens have their own struggles at frequent moves, regularly having to fit in, dads at war repeatedly over the past 12 years and moms who are tired emotionally and physically from doing so much on their own. Add to that some other stigmatized issue (not sure what it was for those lost boys) and that is a resipe for disaster.

Help me save my daughter from herself, from my incompetence, from a misunderstanding world, from the abence of any real reltionship with another human being starting with the most precious one of all - the mother/daughter one. Please Please help me do the right thing so as to recover what I can with her and to help guide her to the best life possbible.

If you got this far I thank you from the bottom of my heart.

From my memories, its not that Aspergers was worst at that age, but its a time, when your classmates do major changes in huge steps. And you are running after them, unable to catch. So until 11-12 years i may be a bit weird, but had some normal friends my age and so on. Until that age you are still meeting with classmates and friends to play games, be it ballgames or boardgames or whatever. While with the start of puberty, I lost the connection with my classmate. I didnt understand why they were suddenly changing and getting different. Suddenly they were all in collecting stickers from boybands and teenie magazines and or creating own collections of picture of the stars they liked, that they cut out of magazines and rearranged them or you met for just talking and so on. I didnt understand it around that time, but before we normally changed what we are doing, so one time we played what that guy liked, one time what this girls liked and so on, so everybody had his turn. And suddenly more and more everything I liked became for more and more of my classmates uninteresting. I was angry and sad then, because I didnt understand why they didnt like the games we played before anymore, I simply saw that they were always doing what others wanted to do, but less and less what I liked. Because of that spending time with friends became more and more boring, I met with them to have a good time and you came home and were frustrated, because of them doing nothing nice all day, only talking. I simply felt that I lost my connection with them, but couldnt help it. So I couldnt force them to have fun with the old stuff we did, but I also tried simply to join in with them, so I copied their behaviour to belong to them, but it only frustrated me, because it simply made no fun to pretend all day to like something you dont like. Maybe it was also a problem, that my parents didnt have much money, so I hardly could afford anything extra. Then they were about a year fans of a boyband and all they did all day was sharing stickers, so I also bought a sticker book to be like them. For the stickers I needed all the money I could afford at that time (around 2 Dollars a week maybe so 4 pack of stickers) so for aaround a half year I spend my money on that stuff and couldnt buy anything I really liked. And then suddenly they all were no longer intersted in that stupid dumb stickers, and began to share another s**t. I was so frustrated around that time, and it was also pretty hard because they seemed to act so dumb for me, when on the other side some bullies also blamed me for being dumb, because of not understanding and acting like them. And it also didnt get better, because later then that typical puberty games started, "truth or duty" (or whatever its called in english), bottlecircling, ... when you simply had still no intend to do so.

Puberty simply was a very dumb and stupid time and it was pretty impossible to keep friends around that ime. So I lost contact with my classmates, had troubles at school during that time because of me veing frustrated and depressed, had a bit more contact with the new classmates that were average one year younger until they also "developed", and spended more time with our neighbor boy, that was 2 years younger, so his and his friends development fitted better with mine. Until they got themselves in puberty, when I lost contact to those too. I also spended some time with the friends of my older sister, funnily it was more easier to have contact with them (5 years older) then to my classmates, because they all already had visited discotheks suficiently and were not talking all the time about boys and girls, so they did more video evenings, or complicated board games. One of the friends of my sister brought me in the end to tabletop and pen and paper roleplaying, and at least I found with that hobby a group that I visited regularly, and were being geeky was pretty normal. ^^

I remember puberty simply as the time, when I lost all my friends all the time, couldnt match up with people my age, but was forced to spend most of my times with them. Until I finally found that role play group it simply sucked.

While I am wondering if you might get more responses having this moved to a new thread (your choice, a moderator could help), I can see why you choose this one.

Honestly, I think you are taking the right steps. Therapy, and even the snooping. The thing with snooping is you have to be very, very careful and not let on that you know the things you know. I know that sounds awful, but it is a parenting tool that works, as I learned from my own mother (not that she has ever admitted to snooping, but since we discovered as adults that she pretty much knew everything, how else did she get the intel?). We need to know, and they need to have privacy. The only way to achieve both is to snoop extremely discretely, to the most limited extent you can while getting the info that you need to, and then keep it to yourself except in the most extreme of circumstances. If you have superwoman instincts you might not need the stealth part, but some of us just weren't born with that, and so we compensate best we can.

Also, you are the person who knows your daughter best, so the therapists cannot do their jobs properly without your input. It your instinct and years of built up knowledge that need to be combined with their training for answers to be found and protocols selected. Don't be afraid to contribute and be pro-active with the professionals, and listen to your instincts when you think something is amiss with either your daughter or someone you've hired.

I don't know what else to say ... I don't really have an answer, and there may not be one. This is all figure-it-out-as-you-go stuff.

Take care

Dear emu Egg,
This such hard stuff, especially when the doctors, therapists, etc aren't doing their job. Even if she is resisting you, you are still the center of her world and she needs to know that you will keep loving her and setting limits. My daughter cuts too when stressed. We have found it helpful to think of it as a form of stimming--sometimes we can substitute chewing gum for her biting herself, and foot massages for cutting. Not always, but more and more. Hang in there!

Dear DW_a_mom,

Being new to all of this - Autism Spectrum Disorders as well as this forum, I am not sure how to do things. I cut-n-pasted my post and edited out the numerous mistakes (Read = how upset I am lately i can't even type. Sigh) and will try to figure out where is the appropriate place to put it. I have a lot to learn (about this site and Autism) – for example, I don’t know what the abbreviations people use here mean, like NT?? I looked for explanations but don’t see where they are. I don’t know the language!

Thanks for your support. I have figured this out on my own - by reading numerous books on Self injury and Cutting and it not making any sense as the vast majority of the teen girls who choose to cope negatively that way have been severely abused (physically or sexually) or grossly neglected. The parenting they had was awful. Their circumstances are horrible and it pained me so much to read those stories and to see also my daughter in the pages. It didn't make sense that she chose that avenue. But I get it now. The books hardly mentioned neurological disorders but to briefly say that kids with autism sometimes self injure - but it was the head bangining, face slapping variety. The books did point to attachment issues and that got me thinking about what was different about her since birth because it is not like her needs weren’t met – she didn’t seem to have social needs at all! We were always told she was highly introverted and so smart - no friends could really understand her. She had aways seemed so happy until in middle school she could not really hide her pain so well. Now I understand why she has unbearable pain she has no voice to explain. She is confused and screaming silently and inwardly for help.

I am pretty careful about my snooping but will be even more so with your warning. I have passwords on my technology devices and accounts where I write about this. I speak on the phone with my sisters and close friends (I seriously need support!) about her when she is not around. When I see her therapist she doesn't know. I leave things as they were in her room. I hate this. But if I hadn't done it I could have lost her to therapists who think they are helping but are encouraging her to individuate and take charge instead of recognizing she is more like a 13 year old emotionally and need to help us to re-connect while supporting her with therapy geared towards assisting her with social cues and getting her to speak about emotions, etc. They know she has a problem with me but they only know her story. No one recommended family therapy but that is what we need, too. She is upset with me because as she approached 18 I became ever more concerned with her lack of independence, her slipping grades (AGAIN), her lack of social outlets and her depression and withdrawal from the family and her interests. Instead of releasing her from all accountability (for hygiene, proper sleep habits, taking her meds herself, simple household chores, etc.), I have started to expect her to show initiative and improvement. College, driving, part-time jobs are all on the horizon. Instead of leaving her to her own devices I took her to therapy which is incredibly hard for her because she does not want to talk about feelings. Come to find out there is a really explainable reason she can’t express her feelings. I had started to hold her accountable for things she was not prepared for. No wonder she is pushing me away. That hurts her! I don’t believe in stigmatizing mental illness so I have called her cutting what it is according to the experts in the books recommended to me by her therapist – “A severely disturbed psychological disorder.” I've called her troubled. These things piss her off. I get why now and I won’t use labels that offend her anymore. I have a lot to learn about how to best parent her. I am a straight shooter and I call it like it is usually so this is unnerving for her. i am going to tone it down. I didn't mean to but being so frank when she is not ready for it is like bullying her. i am so incredibly sorry. She does not admit she has an addiction to cutting. It is complicated. I am talking to my therapist how not to be an enabler but a nurturer and supporter - not of her addiction but of her health and wellbeing. Her newfound diagnosis changes how I see it.

I think I will learn a lot here – from people who both have experienced growing through the teen years with PDD-NOS or similar diagnoses/issues as well as from parents who are experiencing it or have survived these years with their kids on the spectrum. I know the new DSM 5 has changed the way these diagnoses are labeled. I am a newbie. I don’t even know what resources are available to my daughter and our family where we live. Thanks again!

Some of the common abbreviations here and what they mean:

NT - neurotypical (someone with no neurodevelopmental differences)
AS - Asperger Syndrome
ASD - Autism Spectrum Disorder
OCD - Obsessive Compulsive Disorder
ADD/ADHD - Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder
ODD - Oppositional Defiant Disorder
BAP - Broader Autistic Phenotype (people with autistic traits but not enough for an autism spectrum diagnosis, more common among parents of autism spectrum kids)
DS - dear son
DD - dear daughter
DH - dear husband
FBA - Functional Behavioral Analysis (a systematic way of analyzing the functions a behavior serves for a child)
BIP - Behavior Intervention Plan (a plan for how to modify the child's behavior, often in a school setting)

Let me know if there are any others you're confused by.