Teenage autism issues

Stays up all night? Is argumentative? More political? Wants to be on her screens all the time? Sounds like you've got a teenager! :)

To give myself a little background: I'm an autistic woman in my 40's with two autistic teenagers myself. (I was diagnosed at the same time as my children, so I spent the first 35 years of my life wondering what on earth was wrong with me!) I am medication-free, graduated from Uni, have full time work and, after the death of my partner, am a single Mum. So I have done the teenage years from both sides!

Now! On to your daughter...you've described her as being bright and clever and she's in college, so I am assuming by this that she's what the doctors like to refer to as high-functioning, yes?

First off, I want to address what high-functioning does and doesn't mean. Bear with me, please, because this is something quite important. In my experience most doctors who don't specialize in autism do not understand the first thing as to what high functioning really means.

High functioning means:

1) Generally speaking, it means a higher IQ. Like everyone else, autistic people's IQs can and do vary. Despite our different neurology we are still human! It used to be that a higher IQ automatically was sorted into the Asperger category, but that's changing now. (And that's a whole different discussion!) But since your daughter has done well in school up until now I will assume it means her IQ is average to above average.

2) It also, generally speaking, means that those autistic people are able to present themselves publically as "normal." (Or at least some level of normal; most autistics will be pegged as a bit odd or strange or anti-social, for example.) To be more specific: most autistics who are pegged as high functioning can communicate verbally, can manage such things as taking a bus, paying their own bills, cooking their own meals, etc. This really does depend on each and every individual person, of course. It also tends to change with age, but we'll get back to that in a moment. 

What high functioning does not mean:

1) That the person is no longer autistic; that they have somehow outgrown or have been "cured" of their autism. There is no way to cure autism, any more than there is a way to cure blindness or type 1 diabetes. There are ways to accommodate autistic people to help them in their lives - much as you would provide a cane and assistive technology to a blind person, or insulin to a person with type 1 diabetes, for example. However, I have found in my vast experience that the higher functioning an autistic person is, the more likely it is that the people around them will believe that they have outgrown their autism or that it has somehow been cured. This is simply not true, and a great deal of misery on the part of autistic people as well as the people who love and care for them can be attributed to this mistaken belief. If you think that someone no longer has autism (or somehow is less autistic than before) then naturally you are going to get extremely frustrated when they suddenly exhibit more stereotypical autistic behaviours, right? Believe me, I know this to be true and I have found myself getting frustrated with my children when they slip back into some of their “old” autistic behaviours. I think that is a normal parental response! But I have to remind myself that they are not actually slipping back into anything; it is just that, for whatever reason, something is interfering with the coping mechanisms they have created for themselves. That allows me to address whatever it is that is overwhelming them and causing them trouble as opposed to trying to address whatever (negative) behaviours they are exhibiting, if that makes sense. It’s a much more successful approach, believe me!

I am sure you already know that girls especially find ways to hide/disguise/"normalize" their autism. It's why girls are so vastly underrepresented in most literature and studies about autism and vastly under-diagnosed. (I myself have sat in doctor offices and listened to doctors spout absolutely outdated and incorrect nonsense about my daughter's autism - or lack thereof. It is incredibly frustrating. I would not at all be surprised if you had dealt with the same!) I am oftentimes more surprised by my daughter’s slide into her old behaviours than my son’s; I think that is due to my daughter putting in more effort to appear more “normal” on a daily basis. She isn’t "normal" though. She isn’t at all.

So it sounds like, from what you are describing, that your daughter has not dealt with the change to college very well. This is not at all surprising. I myself nearly failed out of Uni my first year! (I was also sacked from my first job when the boss told me I was not friendly enough. Poor teenage me! I had no idea what he was talking about!)

The changes involved in starting Uni were truly overwhelming for me, and I think if you spoke to other autistic adults they would have similar stories to tell. Change is incredibly difficult for autistic people; and again, we do not outgrow this. We can and do learn coping mechanisms! But those take time and usually a period of trial and error, not to mention that we have to adapt them to different circumstances and this is usually not one of our strengths! Your daughter's struggle with insomnia sounds very very familiar to me. As does what you refer to as her "obsession" with her computer. Autistics self-soothe with our special interests! It helps us to calm down and unwind, brings our stress levels down. (My son is currently latched on to the game Plants vs Zombies. Is there anything you would like to know about the game? He can tell you!) The more stressed out we get, the more likely it is that we will turn to those special interests to the exclusion of everything else, which is what you are concerned about with your daughter, of course. What would be an "obsession" for a neurotypical person is, generally speaking, a very normal reaction to stress for an autistic person. Your daughter's behavior is, for an autistic person, very unremarkable right now. I do hope that is somewhat reassuring for you! That's not to say that it might not be hindering her at college, of course. But it is, for an autistic person, a perfectly usual thing to do.

You wrote:

I feel that we need to restrict her computer, monitor her diet, persuade her to take medication and structure her day for her, but I don't want her home to be a negative place.

I think I can promise you, if you try to do any of those things, you will only end up making things worse for yourself as well as your daughter!

Restricting her computer

It sounds like her current special interest - her time on her computer - is the only thing that is making her feel safe/in control/secure. That's why she is spending so much time on it! I know this first hand as an autistic person and as the mother of two autistic people. If your goal is to help her refocus on school, the worst thing you can do is take away the one thing that is keeping her from going into a million pieces! The goal here would be to get her feeling confident and secure about school. That, in turn, would naturally lead to less time spent on her special interests as a means of self-soothing. This is how it works for autistic people! It is one of the ways our neurology differs from others.

If she has done so poorly on her A levels then she most likely feels ashamed and terrified for her future. Punishing her for this - whether it is by restricting her computer time or berating her verbally or what have you - will accomplish nothing but making her feel worse, which will lead to more time with her special interest, trying to self-soothe. You say that she has gone to speak to the school counsellors and that they have been helpful, which is wonderful! What part of what they have said has been helpful to her? What part of what they have said has not been helpful to her? Autistic people oftentimes have difficulties being able to separate things in their minds, so she may be struggling with trying to differentiate between which advice is useful to her and what advice won't help her at all. Has she been able to communicate this to you?

Ah, and then there is communication. I do hope I can offer some useful advice about communication! Verbal communication is difficult for all autistics. There are degrees of difficulties, like anything else, but we do not shine when it comes to verbal exchanges. We do not outgrow this. We are never cured of it. We can learn better and more extensive verbal scripts which make it appear like we are communicating like a non-autistic person, of course, but the moment we are thrust into a new situation where we have no verbal scripts, for example, it all comes crashing down. If you corner an autistic person and demand they speak to you, it will never ever end well. NEVER. I cannot stress this enough. If you interrupt or speak over an autistic person, they will usually shut right down. Autistic people need to communicate in their own way if they are to be able to communicate at all. You would not expect a deaf person to communicate with you if you were speaking aloud with your back turned to them, right? Well, the same holds true for autistics. We can and do communicate, but we do it differently than other people. It is one thing that we do need accomodation for, much like a deaf person needs sign language or a blind person needs braille.

I have found a practical way to address this, however! I do talk with my own children, of course, but when it becomes a stressful conversation we switch to text. Yes, that's right, we use our mobiles (or tablets or computers) on Google Hangouts and we text each other as a means of communication. Now, it might sound really odd to think of three people in the same house all sitting in different rooms messaging each other instead of just sitting and talking, but it works brilliantly for us. I have learned so much about my children's wants and needs by letting them type it out privately instead of trying to communicate in ways that are difficult for all three of us because we are autistic. The children have said it helps them to feel closer to me as well. I've been guilty of talking over them at times, and communicating by messaging means that they get to have their complete say without interruption. It really forces me to pay attention, too, and not dismiss them; in return, it helps them to understand me when I am making decisions they do not agree with! I truly wish I could go back in time to some of my most important relationships in my past and do this; it would have helped both my loved ones and me so much. I've given this idea to neurotypical friends of mine who have autistic children and all of them have reported success. Like any new idea it takes some time and adjustment, but the difference it has made in my home in terms of communication and connection is truly astounding.

I also gave both of my children a notebook and I encourage them to write in it the things they need to tell me. They can give it to me, I can read it over and think about it, and I can then write them back. Again, I know it sounds like poor communication practices, but it is quite the opposite! It allows us to communicate at our own pace, our own intensity and without having to deal with things like eye-contact or turbulent emotional responses instead of the message we are trying to get across. I think that's why so many autistic people do so very well on various online platforms (like Facebook, for example). It's because we communicate best that way - privately, at our own pace, and without pressure. 

I should also note that I still do very poorly with phone calls. I hate them, quite frankly, and I am very well known amongst my co-workers for never answering my phone. :) I respond to texts and emails very promptly and professionally; however, I sound like a complete idiot when answering a phone call. (The children and I refer to it as "word salad" - when our words get all jumbled up like a tossed salad!) It's terrible, it really is. Being forced to actually call someone myself is no better. I have to work myself up to it and it is incredibly stressful for me. I really dislike that about myself! However, I cannot change it, so there it is. I do have a friend who will very happily make personal phone calls for me (like dentist appointments, etc.) and that's a huge help to know that I can ask her if I need to. As you can read here, I can express myself very well with a keyboard. But I can promise you that if you called me on the phone you would wonder what on earth was wrong with me! :) Communicating through writing is something that has made all the difference for me in my personal as well as my professional life. It’s safe to say that it has changed my life, and only for the better. I really encourage you to try the same with your daughter if at all possible.

Monitoring her diet 

I really don't see as how you can accomplish this, realistically. Of course you can only keep food in your house that would conform to whatever dietary needs and/or restrictions that she may have, but there's not much you can do to force her to eat it or restrict her from eating what she likes outside of the home. I can't imagine that trying to monitor an 18 year old's diet would go well. Granted, I know there are adults who do need monitored care, but your daughter obviously doesn't fall into that category. I wish that my own daughter would stop eating the sweets that I know she sneaks on the sly but there's not much I can do about it. I only provide healthy and good choices at home. That's how it is when they gain independence, you know? That applies to autistic teens as well as non-autistic teens. Demanding that she keep a food diary or risk some sort of punitive repercussions is only going to lead to resentment, stress, and, most likely, lying. There's a reason why teens who suffer from eating disorders are treated at clinics. Home monitoring doesn't usually work very well.

Taking medication

Oh, this is a tough one. I am assuming that your daughter's medication is not essential to her life, correct? (Not like insulin, for example.) Again, I don't see how it is you could force her if it is not. Medication for autism is one of those things that the autism community itself is torn over! If it were me I would sit down and write down all of the reasons I felt that things were easier for her when she was taking medication and let her read those in her own time; that might open up a discussion. But perhaps not. I'm sorry. I don't think there is a very good solution for this one at her age. The law is quite clear that she can decide for herself.

There is one good thing to all of this, however! As she says, when she turns 18 there is not much you can do to force her to do anything. That sounds like pretty “normal” teenage behaviour to me! All jokes aside, when my daughter exhibits “normal” teenage behaviours (arguing with me, telling me that I embarrass her, insisting that I can’t tell her what to do) there is a part of me that would cheerfully like to throttle her. However! There is another part of me that is actually thrilled that she’s showing signs of self-reliance and self-competency, because that’s what we all want as the parents of autistic kids, right? We want our children to be able to navigate the “normal” world successfully; we want them to be happy, as you yourself said. Engaging in typical rebellious teenage behaviour is a sign they are on the right track! I am sure that you don’t appreciate your daughter telling you that you cannot force her to do anything (and who would, quite frankly), but on the other hand, isn’t it great that she’s able to actually able to express that? If she can say it to you then it means she can hopefully say it to anyone else (like a boss or a romantic partner, for example) who might try to take advantage of her because she is autistic. So as annoying as it is, well done!

Structuring her days

Now! Here is one that perhaps I can offer some real help for!

I noticed that you twice used the word lazy to describe your daughter in your post and when I read that I cringed.  I can almost guarantee you that all autistic people have had that word applied to them at some point and it is a very hurtful word. Not that autistics can't ever be lazy! Of course we can! We're human beings, and believe me; I like a good lie in or a pizza instead of cooking dinner as much as the next person! But struggling with executive functioning is not the same as being lazy. Difficulties with executive functioning is one of the main reasons (up there with sensory processing disorder) that autistics have difficulties in school, with jobs and even with relationships. If your daughter appears lazy to you then I can almost certainly guarantee that she needs help with executive functioning. Thinking that she is lazy and could do better if she just tried is like thinking that a blind person is lazy and could watch television if they just tried. It doesn’t work that way. Again, I will point out that autistics do not grow out of or are cured of being autistic. Your daughter will have executive functioning problems for the rest of her life. That is just how it is. The goal is for her to learn how to address and/or manage it on her own. Clearly she’s not able to do that at this time, and I am sure that her failure at college is only adding to her stress and anxiety about it. It’s a terrible vicious circle that she obviously cannot break out of on her own. This is where your help would be invaluable for her.

(And let me note right here that naturally there are autistic adults who not only have not learned how to manage their own executive functioning issues but who have no desire whatsoever to learn how to do it either, much as there are some neurotypical adult men out there who are still expecting their mothers to cook and clean and do their laundry for them rather than learning to do it themselves. However, your daughter is still quite young and in her case I would probably attribute it to her not being able to manage it yet as opposed to her simply not caring about it.)

There are many kinds of ways to help her learn to manage her executive functioning issues. Since all autistics are different, it sometimes takes some trial and error before you find the one that works. Sometimes, the thing that used to work for you doesn’t work any longer and you have to find something new! My daughter, for example, uses an app specifically designed by and for autistics to help her structure her days (it has alarms and such) and it works very well for her right now. Her brother, on the other hand, loathed it and refused to use it at all. He prefers a spreadsheet that he and I put together and that we update weekly and print out together. I prefer a good old fashioned diary that I can update and look at. Something like this may be very useful indeed for your daughter. Now I don’t know, you may have tried this sort of thing already and it may not have worked. I would urge two things: a good deal of patience (it took my daughter over a month to really get much use out of her app; there was a time there when I thought it was a complete bust) and a willingness to try a different method if the ones you’ve tried have not succeeded.

Does your daughter perhaps have an opinion on this? Perhaps you could write her a letter stating your concerns and asking her to think about what might be helpful? (Please don’t walk up to her and demand a conversation; autistics invariably fail when this is thrust upon them, see above.) That’s how I was able to get the app for my daughter; she told me she might like to try something on her mobile that would have alarms and I took it from there and did the research for it. Her having that app and using it successfully has made a marked difference in her quality of life (and mine as well) and school went so much better for her after she had gotten used to it. It was well worth the time and frustration it took to get it all settled.

Despite your frustration and worry over her results at college it sounds to me like your daughter is starting to find her own footing. Like I said, her being argumentative and political is not necessarily something that you as a parent are going to enjoy, but the fact that she’s able to have those political opinions and express herself is absolutely a big step forward for her, and it bodes well for her future. No really! It does! If she is ever going to be able to co-exist in a neurotypical world then being able to engage in critical thinking and expressing her thoughts, feelings and emotions is vital for her and should be encouraged. What is most likely happening to her right now is that she is having some setbacks with her ability to cope with her executive functioning issues, and that's something that can be addressed in positive ways that won't end up with the two of you killing each other. J

It might be that while diet and medication and a certain type of structure were things that helped her in the past, due to her age and her cognitive growth she may need a new approach as she’s going through these big changes in her life. Again, this is a good thing! Change is good! Her learning to work with change and not against it is an especially good thing! So the key here would be to work with her (and not against her) on trying to figure out how you can best work with her to address her issues.

If it were me I’d start with trying to open up better lines of communication with her. Give her the space and time and positive encouragement to learn how to help herself. I truly believe this is the key to helping anyone live a happy life, but it especially applies to autistic people. She may not be ready for Uni right now and that's really okay. She may need another year or two before she's able to emotionally handle it. I think if you can sort through her executive functioning issues that you will find her anxiety (and also the hypochondria, which usually stems from anxiety) will also lessen on its own; that’s how it has always worked for me and how I see it work for my children as well.

You also said in your post that your daughter uses her autism as an excuse for everything. Certainly that could just be her making excuses, but as a fellow autistic it does sound to me like she's trying to express her current frustration with what is happening to her and she's having difficulties being understood. Here is a perfect example of where I think encouraging her to write down in her own time and her own way why she feels that way and how she thinks it could be addressed would be extremely beneficial to the both of you. Don't rush her; don't dismiss what she has to say out of hand. Let her try to tell you why. It might clarify some things for the both of you, hopefully. 

Sometimes, when an autistic person is overwhelmed, we need help and we don’t always know the best way to ask for it. I’ve found in my own life that when I ask for help I usually get one of two responses: people either thinking that means I need help on every level and jumping in and trying to take over my life (I just said I needed help making a single phone call, not that I needed you to start to tell me what to do all day long!) or people wanting to know in great personal detail all of the reasons why I need help before they will help me at all. Neither approach is very helpful to me! My late partner was especially guilty of doing the first thing and even though I know it was done out of pure love and a desire to help, it was still incredibly frustrating and even sometimes humiliating for me. It made me feel like I was incapable and even more disabled than I actually was even though I know that was never ever the intent. How we worked around that was that I would write a single thing that I needed help with on a list; when my partner had helped me with just that one thing – no more, no less! - it would get marked off and then I could write down another as needed. Would it be possible for you to do that with your daughter? Ask her to write down one single thing she would need your practical help with (a phone call, perhaps, or going with her to a shop) and then you would do that one single thing only? Believe me, as a fellow parent I know your first instinct is to jump in there and Do All The Things in order to help your child, but at her age she’s bound to take it the wrong way. Once you’ve done that single thing, she can write down one more and you can do just that single thing…and so on and so forth. In this way you will help her to help herself.

Let me be clear: trying to communicate with her on her own terms to help her will absolutely take more time and effort in the beginning than just jumping in and taking away her computer and demanding that she take medication and allow you to monitor her diet and forcing structure on her. However, by communicating with her on her own level and letting her take the lead on what she needs while offering your assistance I think you will see that the end result will be a learned skill that will foster her independence that she will be able to fall back on for the rest of her life.

I would also urge you to communicate/ask for advice from other autistic adults. We do exist! We all made it through our teen years and many of us are what the "normal" world would consider successful people. Most autistic adults would be able to give you insights into your child that you just won't be able to find in clinical books or even in websites that don't involve actual autistic people. If you'd like some suggestions for some sites I'd be happy to provide them.

In any case, if you have gotten this far then it means you have read my novel! :) I hope it was at least somewhat helpful. It’s tricky business, raising an autistic child, I know! Please feel free to ask me any other questions if you think I can assist further!