end game

*

The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism.

It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The success was most notable in improving social withdrawal in the trial group. Since, according to the article, nearly a third of the population diagnosed with Fragile X also have autism, researchers have high hopes regarding Arbaclofen’s implications for the broader autistic population.

The research is exciting. To call it novel and ground-breaking are not exaggerations. This is big, new, hopeful stuff. But like a lot of exciting, novel, ground-breaking, big, new, hopeful stuff, it comes with questions that need to be answered. The biggest of which, for me, is Is it going to be good for our kids in the long run?

When I read the article, I stopped short at this:

“If an intervention makes progress in helping someone navigate the world on their own terms, that’s good news,” [Ari] Ne’eman says. “But let’s remember that “looking and acting normal” aren’t necessarily the only or best way to do that. … It’s important that we have a meaningful conversation about whether or not we’re focusing on the outcomes that matter for making autistic people happy, instead of focusing on making us appear more non-autistic.”

Hopefully, Arbaclofen does the former. Hopefully, it helps people like my daughter navigate the world more easily ON HER OWN TERMS. Hopefully, it simply mitigates some of her toughest challenges and allows her to still feel as though she is fundamentally who she is. But before we run headlong into embracing any of these revolutionary drugs or ground-breaking therapies, I think we have a responsibility to ask those questions. To, as Ari’s quote implies to me, engage in a meaningful dialogue about the cost to our kids. Because, like it or not, there’s always a cost.

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. ”

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you therefore need to pass as something that you’re not can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

I walk the line here. It’s not a free-for-all. There ARE behaviors that are not okay. We live in a civilized society. There are some reasonable expectations within that structure that we, as participants in it must learn to meet. That we won’t hurt others. That we will respect others’ privacy and safety and dignity just as we need and expect them to respect ours. There are skills that are necessary to enable us to interact with others, to make friends if we so desire, to find and keep employment. They are important to learn.

And so too, life is absolutely, positively, without question, easier when you have the ability to make yourself understood in some fashion. And it’s sure as hell easiest when that fashion is the same as everyone else’s.

So by no means do I mean to imply that I think that we should not teach our autistic kids to play by society’s rules just as we do with any kid.

But for me, the underlying questions loom large in every single attempt I make to give my child the tools to conform, to communicate, to participate.

At what cost?

Is it still going to be good for her when she’s no longer a kid?

When she looks back will she say that I gave her the tools to succeed as she was or will she ask why I seemed so intent on changing who she was? 

Yesterday, with this post and all of its big, scary questions still safely tucked away in my Drafts folder, I read an article about California’s ban on Gay Conversion Therapy for children under 18. For the blissfully uninitiated, GCT is the highly controversial and nearly universally condemned practice of attempting to change a person’s sexual orientation through some twisted version of psychotherapy. There is overwhelming evidence that the practice tends far more often to result in depression and suicidal ideation than heterosexualization (no, that’s not a word, but it’s as absurd as the whole concept.)

Just for context, let’s play a little game. Are you straight? If so, do you think that if I gave you aversion therapy – you know, like an electric shock every time I showed you a picture of heterosexual sex – that it might turn you gay? How about if I inundated you with photos of homosexual acts and rewarded you for showing arousal? No? What if I simply told you that your heterosexual feelings were wrong. That they didn’t conform (or that, if not society, then God, had a problem with you acting on them). That you could still BE gay, but you couldn’t ACT gay anymore. So what would happen then?

Well, according to story after story from those who have participated in this practice, what usually happens is that you either fail miserably at being what you’re not — OR — you ‘succeed’ and manage to live the life of someone you’re not. Which leads us back to the ‘overwhelming evidence that such therapy tends far more often to result in depression and suicidal ideation than heterosexualization.’

So what if you’re autistic? And I tell you that it’s okay to BE autistic but not to ACT autistic? Then what?

Is homosexual conversion therapy a perfect parallel to administering drugs for social impairments? God, no. Really, really far from it obviously. But do I think there’s a common lesson in them? Well, yeah, I do. Because when I read the second article, I found myself thinking immediately of the first.

So here I am, dragging this post kicking and screaming from the Drafts folder and out into the light of day.

I don’t have answers. I never claim to. I just have questions that I think we need to remember to ask.

I’ll end with this – based on my limited reading about Arbaclofen, I lean toward thinking that it’s likely a win. That it will indeed not just offer some relief to those who struggle to communicate, but at the same time hopefully give researchers vital information on how the process all works. But long before I’d give it to my own child, I’d have to do a LOT more research. And then I’d have to ask the big questions.

At what cost? 

And

What’s the REAL end game?

Thank you to Ari for making me think, forcing me to examine my approach and keeping me honest about what matters most.

41 thoughts on “end game

  1. One of many days when I am especially appreciative of the sacrifices (of sleep especially!) you make to inform, educate, and challenge us.

  2. Is it possible that the medication takes the away the need to stim? Either by making the world not so overwhelming or by lessening the need for comfort in these situations? I don’t know. My son stims very little, and it is usually when he is overly excited.

  3. I think it is a difficult path to navigate when we try to decide how to help our chlidren. Push them to achieve a little more each time, stretch their tolerances. If we are offered a ‘magic pill’ that might assist in persuing goals like “being able to sit still in school” it does seem like an obvious choice. Then you actually try a medication and your child becomes violently aggressive. You suffer watching them suffer for the two-month minimum to see if they can adjust to a drug that makes them bite themselves and others. All in the hopes that this time, something might improve the quality of their lives. Or the quality of yours. It is making that sort of decision which does show that maybe we are trying to solve problems that don’t exists. However, if that ‘magic pill’ did offer solutions for some children, wouldn’t you feel obligated to try? I think of the controversy some families tackle when giving their children cochlear implants to help deaf children hear. Complicated surgeries that might help a child see. From the outside, it seems obvious: Who wouldn’t want their child to see or hear? But, unless you are the parent of that child and fully recognize the risks or outcome of such procedures, it is a challenge just to make the choice which will likely change their live–either for the good or the bad. I think the best we can hope for, as we struggle to make these decisions, is that there is no judgment from society for choosing NOT to try something or for choosing TO try something regardless of the outcome. That said, no way in HECK would I put a child through sexual orientation training (Gay Conversion Therapy). I don’t think homosexuality is a disease. But, because I cannot help but play devils advocate, it’s funny how easy it is to draw the line about something when it isn’t your child we’re talking about. So I concur with your point about how hard it is to know what is the right thing to do. What may be an ‘obvious’ option from an outside perspective is likely a heart-wrenching one for the family. All we need now is a pill which will tells what that ‘right thing’ is!

  4. As always, you make us think. Their are pros and cons to everything. All medications have side effects and we as parents have to weight the odds and many times, roll the dice, to see if the results are worth it. We have tried many holistic and mainstream medical interventions. We have found that some help, some don’t. Yet, I will continue to try to find intervetions that will help my daughter to live a full life! I also believe that when we have tried interventions and offered feedback, we have hopefully helped at least one other child/family. Thank you, Jess, for always reminding us to think! xoxo!

  5. Trial was initiated by our DAN Gi doc, Tim Buie at MGH. He Rx Baclofen for our son’s GI issues; it is a targeted muscle relaxant that made his tummy empty sooner, so less acid. Also used for decades to treat the tight muscles of CP, so stopped our son’s toe walking and flapping (many, maybe most, of Buie’s patients have ASD). It did this by removing the URGE…no adverse consequence. AND, for two years, it made him so chill and friendly, his psych specialist said he no longer met the criterion for ASD. WOW. But after 2 years, it stopped working for the social stuff. No idea why. HIs ASD came back full on. Buie noted this sudden social cure in 20% of his ASD patients. Arbaclofen is a further refined new version of this old drug that hoped to have a higher efficacy rate. From personal experience, this drug was all good – we still take it, year 7 now – so I hope you can rest easier. It remains to be seen if the effects can be lasting. It made life so much easier for our boy!

  6. Wow. Lots of BIG thought-provoking ideas here. Thanks for posting. These are not easy issues for any of us. Just yesterday I write about facing the question of whether I was trying to intervene in my son’s behavior for him, or for me. One thing is clear- the mor we think, the more we discuss, the more we ask questions, the more we learn from each other and from those who are on the spectrum.

  7. I read this article a few weeks back also. I was excited. I was scared. Cymbie stims. A Lot. Like, all the time. Even in her sleep. Sometimes violently. Some times to the point I’m afraid she will hurt herself rocking so hard. Other times, it’s all she wants to do, and redirecting her to something productive proves to be a challenge, and we face a melt down. It’s a big issue when it impedes her ability to do anything else.
    She would stim all day. YES, ALL day, if I let her.
    But medication scares me. Especially when it’s something new. It will be years upon years before we know the true side affects, and long term affects. So far, we have not chosen to go that route for her. And I’m not judging any one that does. It is simple a matter of what works for your family, and your child. In the end we are all doing the best we can to help our beautiful kids.
    I was excited when i read about this. But i ask many of the same questions you do.

  8. I’m at a loss for how to communicate my thoughts on this….I guess if this drug can actually help some people then that is a good thing. I do feel like medication is not the right choice for us but that is not to say it isn’t for everyone.

    I just wish the headlines were on topics that have a more immediate and significant impact for autistics (especially the 500,000 that are on the verge of aging out of special education). I want to see a headline that reads “New Employment Training Program Gives Hope to Those With Autism” or “Better Housing Solutions for Disabled Adults”. Those are the headlines I’m desperate to see but there needs to be much more direction and support in those areas before they become worth a headline in major publications.

  9. You might be interested in a book called The End of My Addiction, by Dr. Olivier Ameisen. When I first heard of Arbaclofen, I thought of this book and assumed it was a newer, tweaked version of Baclofen. Why newer and tweaked? Because the patent has run out on Baclofen and no money stands to be made unless they could change the formula of the drug. That book is eye opening – and it’s a first hand account of how taking Baclofen made someone feel. It’s also excruciatingly sad that it’s not more well known for people who struggle with addictive behaviors.

  10. I would tend to urge on the side of caution and I love your analysis of the material. I think that we do always have to ask the essential questions at what cost, and, who ultimately is this all being done for? I don’t believe that removing stimming or self calming behaviors should be seen as either necessarily a good thing or the ultimate goal for those living with Autism. I also think that it’s important to retain a healthy degree of skepticism regarding the very prominent reality that ‘finding a cure for autism’ has become big business for many companies, therapists and other hangers on. Thank you for this fantastic and thought provoking post.

  11. I appreciate your comments and your thought provoking dialogue as a speech-language pathologist. The only comment I have is that it would be nice to see “person first” terminology since your point is that these individuals with ASD are people first, not defined by their disability or disorder.

  12. Provocative post.

    As I read, part of me was grateful that some progress has been made to relieve symptoms.

    And the other part of me wanted some answers about why so damned many. “Cure” – well, that’s one HUGE area to chew.

    I’d like to know cause. Because the numbers are too hard to ignore anymore.

  13. Wow… Thought provoking as always. 🙂

    However, I do disagree with making the arguement between homosexualtity and autism. Two totally different issues in my mind. I believe… yes you heard me correct, this is my belief, right or wrong, not pushing my opion on anyone, or saying that I am right, just giving my belief… (hopefully, that is enough of a disclaimer) that whether you are homosexual or heterosexual… that is a choice you make.

    I choose to love my husband every day. I don’t like him all the time, and I certainly want to throw him through the window sometimes, but I choose to love him. I could also choose to walk away if I wanted. That is a choice that I make. I am also attracted to other people, but I do not choose to act on those attractions. I do not choose to love another. This is a choice I make, right or wrong, but it is my choice. Who you love is Your Choice. But it is a choice, right or wrong.

    My daughter has no choice in being different. She has no choice in being on the spectrum. It was “given” to her at birth. Anything that will allow my girl to navigate this world, better is worth a shot. I do agree that “at what cost” is always a question worth asking. But, I do hope that for those on the spectrum that have trouble communicating, this drug will be a WIN in the longterm and the shortterm.

    THANK YOU as always. BLESSINGS!

    • What I would respectfully ask as a follow up is, ‘Do you believe that it is your choice to be attracted to men rather than women?’ Not your husband, per se, but men in general rather than women.

      I agree wholeheartedly that monogamy is a choice and that working to maintain a relationship with a person you love is a choice, but if, as you say, homosexuality in general is a choice, then it would follow logically that you could also have made the choice to love a woman rather than a man, right? That you didn’t just follow your ‘wiring’ in being attracted to men, but that you made a conscious choice to do so. No?

      • Yes, I do believe that I have a choice to love men or women…. That is MY choice to make. I make it. I can choose to act or not to act. I can choose to love a woman or I can choose to love a man as a “NT” individual. We all have wiring inside of us. That doesn’t make it right or wrong. It makes us who we are…. But, I have the free will to make a conscious choice. All I am saying is that my daughter was not given a “choice” to be autistic. She doesn’t have a choice on whether to “act” on her wiring. I have to “choose” to act on loving a man or a woman. Theoretically speaking, I could be gay…. but still choose to love no one. I am not arguing the point of homosexualtiy vs. heterosexuality… I am arguing the “choice” of making a conscious decision of who I love VS. no choice of being on the autism spectrum.

        Oh how I love your blog…. 🙂 (and you too)

    • I think you make the mistake here of assuming your understanding of your sexuality can be generalized to others. I can assure you my attraction to other women was no more a choice for me than my son and your daughter’s autism was for them. The only choice I had was to accept and love myself for who I am- the way my brain was wired to be- or to live a lie to please other people.
      We run great dangers when we generalize our experiences to others rather than listening to and believing the ways they experience the world differently than us. Looking someone in the eye when I speak to them is no big deal for me. But, for my son it is physically painful. I know that because he told me. I don’t fully understand it because it is not my experience but, I believe it to be true for him and therefore do not allow anyone to force him to make eye contact.
      No, our kid’s autism was not a choice for them, but there will be things they do that others will consider a choice like stimming or eye contact. I think what Jess, questions so well here is the idea that before we bring any therapy/treatment/etc to our kids we do our best to step outside of our own understanding of things and try to truly question what it brings to our children.

      • Outrunning the storm ~ First, your point is very well taken and understood. Second, I do not assume my understanding of sexuality can be generalized to others… Thus, my disclaimer in my post…”homosexualtity and autism. Two totally different issues in my mind. I believe… yes you heard me correct, this is my belief, right or wrong, not pushing my opinion on anyone, or saying that I am right, just giving my belief… (hopefully, that is enough of a disclaimer)”

        Theoretically speaking, I could be gay…. but still choose to love no one. I have a choice in that. I am not arguing the point of homosexualtiy vs. heterosexuality… I am arguing the “choice” of making a conscious decision of who I love VS. no choice of being on the autism spectrum.

        We all have wiring inside of us. That doesn’t make it right or wrong. It makes us who we are…. But, as a “NT’ individual I have the free will to make a conscious choice on how I act on my internal wiring. All I am saying is that my daughter was not given a “choice” to be autistic. She doesn’t have a choice on whether to “act” on her wiring.

        I hope you get my distinction between the two. 🙂

    • There are some really real parallels, though- GCT and ABA were both Lovaas things, using pretty much the same methods. You can find his papers. This is a fact, not an opinion: He used extremely similar methods to try to change both, but it is currently considered gold standard for autism and abusive for gay. That should say something.

  14. I really enjoy your blog. One day it’s a wonderful post about a critical topic like hair color! Yes, I said critical.
    The next day a real “thinker”.
    When I was first starting this journey I would hear mother’s say that they wouldnt change their child at all. I would think- I would! I wouldnt want them to live like this. Then you travel further down the road letting go of your own fears and insecurities. You learn acceptance and true nonconditional love. Then, without fan fare you come to that place- the place where you realize that you love them just as they are. Sure you want to help them in anyway but its no different than your ‘typical’ child. They are who they are.

  15. Great Post. Lots of tough issues. No easy answers. As my daughter gets older she’s more able to communicate her needs and wants. I’m hoping that continues so that she can participate more in any decisons. I know she wants friends and to interact with her peers and her stimming can prevent that. But I also know she gets immense joy from stimming and it’s part of who she is.

  16. This is incredibly though-provoking. I, too, have been on the journey from wanting to change my son so that he was “typical” to a place of acceptance where I see his quirks and abilities as a part of him.I wish he didn’t have to struggle as much as he does with our societal norms, nor do I wish he had as much trouble with anxiety at school…but when it comes down to it, the aspects of my son that are most endearing and make him so uniquely him are also those things that are part of his being autistic. As he matures and develops more functional speech, I do pray and hope that he is able to tell me what he wants…so that we can follow his wishes more. I want to follow his lead, rather than dictating everything for him.

  17. Thank you for your words! It is important to think about helping without changing who are kids are, essentially. I don’t think this would be right for my son, because it inability to communicate is a greater detriment to socialization. If someone could clear up the blockage in his brain that allows him to understand so well, but not communicate, I would be all for it. I just want him to be able to get across his needs, wants, pain, frustration, etc. through clear communication so I/we can help him. The rest is who he is and I wouldn’t change one wonderfully, remarkable bit 🙂

  18. The medication question isn’t too far from the cure debate: The answer should be unique as the individual. I’m grateful choices even exist for those who want solutions. Is repetitive behavior bad? Sometimes yes, sometimes no. My daughter pulls out her hair, her eyelashes, eyebrows and any other hair. It makes her prone infection, I quantify this as a negative- consequence repetitive behavior. She also has other behaviors in that category which are taking away from and not adding to her life. Her big sister also has similar behaviors and picks at her skin. She has scars, bleeds and gets infections and the holes are everywhere on her skin.

    I’m sure they enjoy indulging in it, they say it’s relaxing but every addiction has its thrills and its demons. They also tell me they wish they didn’t do it and don’t know how to stop.

    That is why having a choice is key. Maybe someone else’s kid doesn’t have behaviors that cause bodily harm, but the scary thing to me is how many people want to decide for everyone else. “Well, I don’t scratch my skin off my body til it looks like 3rd degree burns so I guess nobody needs medicine!” So um, thanks for making a unilateral judgement and choice for our situation? It’s an egocentric point of view of the world, but oftentimes this is how others perceive issues: if it doesn’t apply to them, it’s not valid. Thankfully, there are a lot of other people who are world-minded and try to see from outside their own experiences.

  19. Only speaking from the Fragile X community’s perspective here…. Arbaclofan isn’t being studied with the goal of stopping repetitive movements / quell a behavior (a behavior which, within the Fragile X community is often associated with anxiety.) The end goal is finding a cure for Fragile X by changing the balance of chemicals within the brain.

    In the case of Fragile X there is a a specific gene that usually creates a specific chemical (FMRP) that is shut off. This regulatory chemical controls the production of a number of other chemicals. Due to this imbalance there are quite a few behaviors / anxieties that are present, as well as difficulty interacting, cognitive impairment, etc.

    In general, Fragile X researchers are attempting to balance these chemicals with drugs. With Arbaclofan specifically they are focusing on a very specific piece of this mechanism that is not regulated. And, in the end, this drug may be helpful to the entire autism community.

    I wouldn’t say the researchers are seeking to stop / squelch / minimize / remove specific behavior but rather the focus is to regulate levels of chemicals in the brain/cells which then affect reactions to stimuli and in the end… behaviors.

    And no, I don’t care if my kid handflaps and never looks anyone in the eye his entire life! I love him to bits either way and will do everything I can to allow the world to see him as I do… now if I could only convince a few school professionals of this! But I digress!

    But if I could take away his NEED calm, sooth, and shut out an overwhelming world because the world was already a place in which he was free and comfortable .. then that would be a good day indeed!

    P.S. I love your work! Thanks for being there. You have provided strength to me over the years!

  20. I’d like to share one more thought about the concept of a cure or medication making someone not themselves. My daughters are autistic. One is now 19 years old and the other is 15. Anything that ever helped my daughters did not change their core. It only made them be able to be MORE of who they already were. My daughter was on seizure meds for a decade. While it does have side effects, it did help her be able to live her life. It did not change her favorite dessert. It didn’t change the things that make her smile and laugh. It did not change the fact she is a perfectionist and hates making mistakes. It didn’t change how much she loves holidays. She still hates bees, flies and spiders. She still flaps her hands when she’s happy and wrings them when she’s distraught. I don’t mind the hand flapping, it’s awesome because for years that’s how I knew she was happy.The difference in all this is she just got to share these things with us more instead of being paralyzed from her fear and anxieties (oh, and those are still there too, just not at Mach 4 levels). I found some amazing therapies over the years to help them grow into who they are, just as any parent does for their child, but not one of those things ever changed their core.
    This is an interesting topic and one we should be discussing. Do we want change? (Change is scary!) Do we let our child be exactly as they are without interference? Even with therapies? How much change is acceptable in life for anyone?
    Thank you for your great writing and bringing up this subject!

  21. It sounds like this drug may work like an antidepressant did for my son, who had been plagued by anxiety and obsessive-compulisve tendencies. The meds (a tiny dose was all it took) helped him dramatically. As his anxiety subsided his engagement with the world — at school, in therapies, in general — opened up in a way that astonished us all. And as he engaged and learned more efficiently, he began to overcome some of the behaviors and quirks associated with ASDs.

    Was he “cured?” No. Was he fundamentally altered? No. Was I worried at the time about the implications of medicating him? Initially, perhaps. But by the time we resorted to them, all I cared about was finding a way to help ease his pain and misery.

    His journey has been a tough one but the meds smoothed out many of the bumps in the road. And, most importantly for us, transformed him from a miserable kid into a happy one. I can’t imagine where he’d be today without the help that the meds, which by the way he no longer needs after about 7 years, gave him.

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  25. Jess,

    Thanks for the very thoughtful post. I am not autistic but I have close family that are (among other disabilities). I think you are correct…we want for our loved ones to not be burdened by their autism. We don’t want their personality to disappear. As an educator…I have heard too many conversations about stopping stims. Behavior that is sensory related is the hardest to “get rid of” for a reason. I would appreciate the opportunity to repost this on http://thinkinclusive.us. Thanks for your time.

  26. Pingback: End Game

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