The endless anxieties of “everything matters,” and the question of medication

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My son’s autism is punctuated by extremely high anxiety levels; so high, and so hard to manage, that we specifically asked his developmental pediatrician to re-evaluate him for a separate anxiety disorder in addition to the autism, and to consider putting him on meds. She concluded that the anxiety was purely part of the autism, and was extremely reluctant to put him on meds considering he was only four years-old at the time. She suggested more management methods (which we were already using), and told us to just persist. Over time his anxieties have become more manageable, but they still make almost every part of every day, exhausting and difficult.

The best summary I can provide of what it’s like to live with – and how it so differs from his neurotypical brother – is that it’s like every little thing matters and has consequences.

The clothes he wears must be just-so. That used to be they had to be a certain type of cotton, with no zips, no socks, no hats. He’d refuse to sleep under sheets, even in winter. Now it’s that the buttons must always be done up, preferably add up to three, everything that can be in a bow must be in a bow, socks must be pulled up high and the sock heel must be positioned “correctly.”

The food he eats must be just right too. The pizza crusts he’ll eat must not have any glazing on them, or any evidence of ingredients showing on it. Jam sandwiches must not have any butter, and preferably number six pieces to a plate. I’m just happy we got him past only eating chips that must always be present to a certain amount in front of him (endless top-ups).

Everything has rules and expectations and order. At its worst he was controlling the windows and doors and seating arrangements, and who was allowed to talk. Currently he even controls my facial expressions; again though, I am glad that he even makes eye contact and knows how to read what my facial expressions mean.

How does he control these things? Why don’t I just stamp it out as naughty behaviour? First off, it’s not “naughty”, it’s anxiety; he doesn’t scream and shout and tantrum if he doesn’t get his way, he cries and shakes and shrinks into himself. It’s like watching someone disappear in front of your eyes, to the point where your words don’t penetrate and their senses shut down, leaving a trembling terrified person, who can take hours to calm down. This used to involve self-harm. There are days where one meltdown early in the morning, have meant that he’s wired high for the rest of the day – where even more things than usual will set him off.

If I’m not careful and ever-watchful, whole new obsessions and anxieties will regularly infiltrate his daily life. I have to be constantly mindful of his reactions and particularly aware of any new repeated phrases or behaviours he exhibits, as first signs of an emerging problem. If I’m light-hearted at those moments, and gently move him away from the thing that he’s starting to get anxious about, I can defuse the new bomb before it’s set up. If I’m distracted at the time or don’t treat the situation in the correct way, I may have to pay the price with months (or even over a year) of behavioural consequences.

His neurotypical brother doesn’t get hang-ups about things. He has preferences, but he doesn’t obsess. He throws tantrums, but he never has meltdowns. He’ll cry when he’s upset, but it never goes on for hours. Mostly he is happy and relaxed and easily distracted and amused. He is a “normal” kid. Sometimes I catch myself being on edge around him, watching for emerging anxieties and behaviours that never happen, because he isn’t autistic. I have to remind myself to relax, every tiny thing doesn’t matter. But as soon as my autistic son comes home from school or walks in the room, I have to ramp up my own awareness again, or pay the price for forgetting to do so.

It is exhausting. It has made me anxious too (not surprisingly). Sometimes it makes me so mad, or incredibly sad, but almost always frustrated beyond belief. I keep using the management strategies we have in place, and introduce new ones as needed. To a certain degree they have become automatic, but because they require such high levels of awareness and responsiveness, they still require a particularly high level of constant alertness on my behalf.

I do sometimes still wonder whether my son would benefit from medication to bring down his high levels of anxiety, just so he can function without so often being on the edge of a meltdown. But until and unless his developmental pediatrician agrees, I accept that this is just how it has to be for now. I’m hopeful that time – and the language and skills that come with that time – will bring down the anxieties to a level that medication isn’t a thought that crosses my mind anymore. I don’t want to medicate my son, I’m aware of negative side-effects, and I am impressed with his progress (he’s never been on meds for his autism) over the past two years.

Just one day at a time then for now, with a large dollop of hope for the future, and a fair heaping of faith (perhaps the wrong word) that his pediatrician is correct that what we’re already doing is the best thing for him. It’s part of why I read so many books and blogs and articles about autism everyday; searching for reassurance that we’re doing the right thing, and new approaches if we’re not.

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20 Responses to The endless anxieties of “everything matters,” and the question of medication

  1. So, that’s weird. Have just posted a similar story on my own blog. 2 women, different sides of the world, similar kids, same worries and fears. Am with you on the constant searching. I may be looking in the wrong places but I certainly share all your sentiments. Good luck, mrs! xx

  2. Bill says:

    I am endowed with Asperger’s.

    I AM NOT A DOCTOR CONSULT A PHYSICIAN!

    I completely agree with your aversion to giving your child psycho-active medicines; I experimented with them (with medical supervision of course!) to deal with my startle disease, and I could not tolerate any of them and still perform my job. (They didn’t seem to help the startles either!)

    I would like to point out that there is a relatively safe, non psycho-active medicine which may help a little bit. The common blood pressure medicine Tenormin (Generic Atenolol) is a Beta-blocker (beta-adrenergic blocking agent) which essentially blocks the effect of adrenaline. It has no affect on anxiety, but anxiety releases adrenaline, which creates the bouncing off the walls effect for hours after an anxiety event.
    This is NOT mind control, it has no direct effect on the mind. The only indirect effect I have noticed is- when I used to get a little drowsy, caffeine would perk me up, but atenolol seems to block caffeine too.
    Technically, this is an off-label use, but plenty of doctors are prescribing Atenolol for anxiety prone people, and it has even been used to prevent PTSD.

    I have a severe startle disease, so with every unexpected sound I startle, and for sounds at a level or circumstance which would startle any normal person, I am startled so badly I get serious injury from the extreme moro reflex as I am instantly and uncontrollably forced into a fetal position even when standing. I have noticed a brief cramping sensation in my kidneys when this happens, and logic suggests I am actually feeling the adrenal glands release a massive dose of adrenaline. Unfortunately for me there is a positive feedback mechanism going on; the first startle of the day releases adrenaline, which then primes me to have an even stronger response the next time I am startled, and so it builds throughout the day. The normal dose of Atenolol in adults is 50 mg per day; for a while I was taking four times that dose with no ill effects, though I have cut back to twice the normal dose as I am currently less stressed. (It is probably pointless to keep increasing the dose above a certain level; once something is blocked completely, adding more won’t accomplish anything.) (The toxic LD-50 in mice is 2000-3000 mg/kg which would be a MASSIVE dose compared to the 50 mg pills I take.)

    I still have some adrenaline problems even at 100 mg/day, but they are manageable. (For instance, if I watch a scary movie, I cannot sleep all night, and I mean all night, this is not hyperbole!) Oh, and the stuff cures my high blood pressure too, without having to take a diuretic or modify my diet.

    I AM NOT A DOCTOR CONSULT A PHYSICIAN!

    • Thank you for sharing that Bill, I’ll mention it to the pediatrician next time we see her (which should be within the next few month I believe – she’s due to follow up how school is going for him).

  3. Well, that brought me back! My youngest brother was very similar. The socks, the clothes, the way things felt on the back of his neck… Getting my brothers ready for school wasn’t something your average household could ever understand. I remember the huge, lengthy meltdowns in the car when mom would miss our exit (which she often did, she hadn’t had neurofeedback yet!) and my tiny brother (although he was 11 or 12) would scream ‘Don’t go back on the Poo highway!!’. We teenage sisters would just huff and pull him off our heads biting our tongues because mom would never allow us to say, or even admit we were thinking, he’s so annoying. However, mom never didn’t turn the car around, she just kindly explained why it had to be done and why it would be okay and why, why, why. My mom rarely avoided the meltdowns but rather held my brothers hands and explained them through it.

    When my baby brother was 21 and tearing up my calendar because he couldn’t stand where the 5 landed, I had a moment of understanding. Albeit a short moment. For him, the problem of where the 5 landed in relation to the other numbers was as real as my concerns that I look ugly and fat and why does my husband love me? His is no more ridiculous than mine, just less common. And in both our cases we need to get over it. But we won’t if we don’t want to or if the world treats us like our problems are valid or stupid. That particular brother is now 28 and lives on his own, pays his own bills, is a popular small town lawn mower and handy man. He still calls me or mom sometimes when he is bothered by things he wouldn’t be comfortable sharing with others (cars are being made too round or he wishes he had been a normal high school kid with an xbox) but he’s able to handle most of life’s challenges. With support. I think partly because my mom always expected him to, but never expected him to know how or why without her guidance. Also, neurofeedback has been huge for him.

    So Linda, I understand the exhaustion! Almost like living with an abusive spouse, tip toeing and avoiding meltdowns. Except that this little persons life matters to you so much. And the meltdowns are possible doorways to other, bigger concerns. But have you considered that either way, you are doing? When you are helping him feel comfortable by manipulating his environment you are constantly aware and exhausted. On the other hand if you challenge him and he has a meltdown, you are again working hard to guide him back, and your exhausted. However, that exhaustion is one that has the two of you aiming for a specific goal. Becoming comfortable with an environment that is ever changing and often not in your control.

    Please know that this is a suggestion from a sister of autism and the mother of two almost autistic boys. I don’t truly know what it is to be the mother. I don’t know if that makes my observations more or less useful. I do know that I think you are beautiful for caring and sharing and asking and wondering and always bringing it back to you and your family. At the end of the day, you are your families expert. And you are quite obviously an intentional one!

    And as a quick aside, thank you for all of your beautiful blogs. They have helped me learn who I am and discover my own opinions. You write with a true intention to discover, rather than a need to shove your opinion into the world in order to feel important and on a mission. Your children are lucky to have you on their side!

    • Thank you as always Tsara xxx

      I was interested to see you say “Almost like living with an abusive spouse, tip toeing and avoiding meltdowns.” A while back I saw an ad telling people what it was like for women living in abusive relationships, and it was like a description of what life is often like with my boy. Completely different motivations and personalities behind the actions of course, but with the same sort of resulting constant anxiety and fear of consequences. I thought about writing a post about it at the time, but I just couldn’t word it in such a way as to avoid unintentionally upsetting either battered women, or people thinking I didn’t dearly love my son and know he doesn’t wish me any harm. Still, the observation was there, and it’s so interesting to see you mention the same comparison.

      • I’m glad you weren’t offended by my comparison. Admittedly after I posted, I worried! I have lived with both abuse and autism so I see the similarities but with a true understanding of the important differences. So often in an attempt to not offend we lose an opportunity to share. Thank you for being so open minded!

      • EK says:

        To be honest, I find it strange that you did not mention autistic people in your list (of people that you were worried about upsetting). I’m both autistic and female, and this comparison gave me quite a jolt. I also have autistic family members, one with behaviors more difficult to deal with than mine (even for myself, though seemingly less so than for other people around him – perhaps not unsurprisingly). I’d also ask, just in case, that you take what I write here at face value – I don’t doubt your intentions, motivation, or your devotion to and love for your son. Overall I found your post very interesting.

      • Hi EK.

        The “or” in the sentence your referring to, was not exhaustive. If I tried to list every person or group of people I might unintentionally offend by comparing how it feels to live with a highly anxious autistic child to an abused spouse, I would be sat at this computer an awful long time, and still have left someone off the list. Which is – as I said – part of the reason I decided not to share that discussion in a post. (I appear to have even offended you just by leaving you off my list of potentially offended people!)

        Though the comparison might upset or shock you, it is a very real comparison in terms of the emotions felt (resulting anxiety, confusion, on-edge, nothing’s ever done right, living in fear of consequences in your own home, mental exhaustion, inescapable, etc); not in terms of the actual notion of abuse. I know this emotional similarity unfortunately from personal experience of living with actual abuse in my past (pre children), as does Tsara evidently.

  4. Sharon says:

    I relate to this. Harri’s anxiety responses are just starting to emerge. A couple of months ago he enjoyed going through the car wash, then a couple of weeks ago he completely freaked out. I have never seen anyone so terrified. He shook and screamed and as soon as we came out the other end I had to park the car and hold him to calm him. One of this first questions he ever asked me was, is it scary? Which essentially is the same thing he asks whenever exposed to anything new. It’s interesting to watch because he has a strong curious streak too, and so is conflicted between his curiosity and anxiety, wants to see, touch, understand, but is nervous and afraid to approach the object of interest.
    When he was about 8 months old I was diagnosed with Post Natal Anxiety. Living with a child who continually cried and needed constant motion to sleep during the day led to me developing a hyper arousal response. If someone dropped a spoon I lept in the air. It is as if the flight or fight response if turned up too high and stuck, I think this gives me some insight into the anxiety our kids feel. It is a powerful biological/cognitive process and hard to break. And heartbreaking to watch in our kids.
    Personally I think medication is a good thing if it alleviates distress without too many side effects. And used in tandem with teaching self soothing skills. AS his mum, you are best placed to determine when and if you need to push the issue.

  5. Aspergirl Maybe says:

    I have been terrified of giving my son psychiatric meds for years, even though I take one myself, so I completely understand. It is hard to see them suffer and wonder if a med would help however.

    Perhaps speaking with a psychiatric professional who is more familiar with these meds would allow you to get more of your questions answered and tease out the issues a bit more clearly. I did finally put my son on a psych med last month to address his most pressing issue and have been extremely pleased with the results so far, although I am still continuing other therapies and watching carefully for side effects.

    Our psychiatric NP recommended a book called Straight Talk About Psychiatric Meds for Children (or similar title) and I found that helpful as well.

    One thing that has always concerned me on the other side of the issue is that not interrupting certain thought patterns or behaviors (by whatever means you choose to do so) allows them to become even more ingrained in the brain and can become more serious and harder to change. I have experienced this myself with depression and anxiety and found a low dose of a medication helpful combined with ongoing cognitive behavioral therapy.

  6. Pamela says:

    I’ve noticed how quick you are to reassure or to intervene when he does something – often before I’ve even seen it start. You’ve always been very aware and super perceptive even as a child. I totally understand, having seen how he can get so stuck and overwrought about something. It’s just great that he copes so well now with going to school all day. Your constant reassurance has paid dividends.

  7. EK says:

    Autism and Oughtisms – in response to your comment (I did not see a ‘reply’ button at the bottom of the post, and couldn’t respond directly) – you did not offend me, nor did I say that you did. I did not expect for your list to be exhaustive; that aside, autistic people are one of the two targets of a comparison that you expected could be upsetting, so I’m not sure that this was out of line. I also did not suspect you of intentionally overlooking this group – nor did I accuse you of intentional callousness, if this is how it came across. Neither did I at any point question your emotions, sincerity, or personal experience with the subject (I still don’t).

    I commented to point out my reaction in part because I would be very surprised if other autistic people would not react similarly; I don’t see how it matters whether I personally was upset by it or not. There is a difference between feeling offended, and the effects of in essence being told that you did something terrible (i.e. inflict severe emotional abuse on someone, or something comparable) by existing, even provided that doing so was unintentional on your part, etc.. What is/was relevant to me is the following: the reaction that autistic people may have to reading that living with them is like living with an abusive spouse – as well as what impression that a casual reader would leave with after reading this (as well as the real-life, persistent, and often severe consequences of these impressions, which are already widespread and deeply entrenched, for any autistic person). These are the only issues that I intended to address between the two comments that I have left here.

    • I appreciate your clarification EK.

      I’d respond though that you would be reading into the situation too much if you thought that either myself, or Tsara, or any one else who had suffered such emotions, that we ever as a simple consequence wished the person causing the suffering would not exist. (Even victims of severe abusers do not automatically wish their abusers didn’t exist, so it really is an extraordinary leap for you to have made.) It is a normal part of human experience that we suffer horribly for the ones we love, whether they mean to cause us suffering or not. Be it physically or emotionally or mentally. This is particularly true re our children – whether they are NT or ASD you still “suffer” as a parent in bringing them up. I don’t feel responsible for the horror my mother went through bringing me up, even though it would have been hard and exhausting work. It is the nature of child-rearing, and the choice we make we choose to have a child. (“Suffer” is perhaps not the best word, but it will do for the purposes of this discussion.)

      Bringing up an autistic child is extra trying, it wipes you out in almost every conceivable way, particularly if the child is quite severe. The emotional aftermath of dealing with a horrendously anxious child can leave the same emotional fallout as leaving with an abusive person. The fact that the two are alike in their aftermath, is an observation, not a critique of the child or of autistic people in general. To draw a line between the end states and their causes (intentional callous abuse versus mere existence of the child), is neither something that was suggested nor something intended. I cannot stop you – or anyone else – from reading into it something that is not there. I can foresee the potential for people to completely misunderstand, and indeed it was such fore-thought that stopped me doing such a post.

      For all of this I do not think we should demand that parents not say how they feel, or not use existing experiences to try to explain how they feel. It is incredibly important to feel free to share emotions and experiences freely, in order to come to terms with those experiences and emotions. It is my view though that a blog is not quite the right place to share that particular comparison, and I stand by that. But I would not edit Tsara from making the observation, and neither would I hold back in the context of a comment section from sympathising and showing my mutual understanding.

      I don’t know where this leaves your opinion of me or the comments. Enough to say that if you want to discuss it further here, that is fine. I would not edit you from doing so either.

      • EK says:

        Thanks for your reply. I’m not sure that I have much more to say on the subject, but I wanted to note several things (having now written what’s below, I should apologize for the verbosity):

        “you would be reading into the situation too much if you thought that either myself, or Tsara, or any one else who had suffered such emotions, that we ever as a simple consequence wished the person causing the suffering would not exist”

        I did not for a moment get this impression – neither from your comments, nor from your other writings (I’ve read several posts on your blog – I found most of what you write interesting and well thought-out; if I had gotten that impression, I would not have bothered commenting). It is neither my interest or intention to ascribe mental states to you – unless you have explicitly and unambiguously stated that you feel something, in which case I haven’t seen reason not to take you at your word. What you reference above is also not what I stated in my previous comment (from my vantage point, this is in turn reading too much into what I said). My basic existence (or substitute that of any autistic person) is unalterably tied with being autistic, as well as to any difficulties that this fact brings for me or others around me* – the latter (i.e. my or someone else’s existence as an autistic person, and any consequent difficulties for any involved) is what is consequently being compared to living with an abusive spouse, whether or not we’re talking only about end states, which is what had I assumed at the outset, as you and Tsara made that fairly clear (I’m an adult female in my late twenties; I have not experienced spousal abuse personally, but this is not foreign to me; nor does it go over my head).

        This is what I was trying to communicate with my statement – not that you wished non-existence on your children, or anything similar to this. As I also mentioned, I have a much younger sibling who has many of the same difficulties that you list above. If I gave the impression that dealing with them has been in any respect easy or simple, this is false (when I stated that I have an easier time of this than others, I did not mean that it was easy – just less difficult, as it tends to be easier for me to figure out what the problem is, him being effectively a carbon copy of me, or to head it off before a full-scale meltdown, etc.). I don’t expect it not to be difficult for anybody else.

        Thank you also for clarifying what you meant – this is helpful. When I first commented, I was responding to what you said, not to what I thought your motivations in saying it were. As I stated, my concerns were the practical consequences of statements like this – not your intentions. For relevant background, my experience is that similar statements are very frequently made, *particularly* in reference to autistic children – and autistic adults are frequently and *very explicitly* told that they should feel guilty for being terrible burdens on their parents – even when nothing is known by the parties in question about either their childhoods, or their parents’ experiences thereof; again, I am not insinuating that you have accused me of anything along these lines, etc.. This is, however, a pattern that repeatedly occurs in, and both in scale and content is somewhat unique to, discourse about autistic people. As I stated in my previous comment, this has consequences for a lot of people that go beyond hurt feelings.

        Lastly, I did not make any demands, or claim that either you, or other parents, should not be able to say something (anything) on this topic or others. I am not asking you to edit anything above, nor would I want you to. I expected that you would make your own decisions if any were called for (outside of editing the blog or comments, which did not occur to me), either based on or disregarding any of the information I’ve provided above, which may or may not be relevant, or false, or misleading (clearly I don’t think that it’s false or irrelevant, or misleading, but I have my own biases and experience, and could be utterly mistaken). I did not intend at any point to tell you what to do (this again would reading too much into what I said).

        * by this I also don’t mean to say that everything I do or have done is out of my control, or that I don’t have any responsibility for my past or present actions, etc. (hopefully that’s clear).

      • I think we understand each other EK. I don’t think we even particularly disagree on anything of import. We definitely both agree that the comparison with an abusive spouse can do damage and create unhelpful further comparisons that muddy rather than clear the waters.

        And I should add a very genuine “thank you” for your kind words about my blog posts 🙂

        For future reference, if you would like to reply to the bottom of an ongoing comment discussion, you just click “reply” to the latest addition of that thread which has a reply option. It is a confusing and counter-intuitive set-up, it took me a while to figure it out too! If you wanted to give it a go I’d happily remove any accident you had in the process if you asked me to (remove a comment that is not where you wanted it to be). But adding a comment to the bottom of all the comments (not immediately following the exact comment-discussion) is fine of course too!

        I do hope you comment on future posts 🙂

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