Frazzled mum

  1. Hi ,I am the frazzled mum of a fifteen year old autistic daughter. I don't know how much longer I can cope. She had a diagnosis in year 2 and since then we she has struggled with her education, her reading is is still only that of a six year old. Despite that she enjoys School and finds the routine good and she is very well behaved. Despite this it is her behaviour at home that we are having problems with. She constantly demands our attention and any attention will do. She creates illnesses and starts arguments even though she hasn't got the sophistication to argue and every mealtime ends in a complete meltdown. I don't think I have the skills to deal with it. HELP.
Parents
  • hello 'frazzled'

     i am autistic. please take all which follows as open opinion. i am no paediatrician. i will however attempt to a) give insight from the autistic perspective b) offer possible solutions/perspectives

     anxiety - anxiety is part of the autistic landscape. it arises when we become overloaded by either changes to our environment, or as a result of excessive stimulus. your daughter, despite being well behaved at school, is by the sound of it suffering from anxiety. this is manifesting at home because, i suspect, she is holding herself together in the school hours, and then when at home, all that she's bottled up is coming out. this is a good thing on the one hand, in that she can let it all out, but obviously not so good for you being on the receiving end of it. also, it's not so good that she is at this level of meltdown down and perhaps could do with some forms of intervention. intervention could come in several forms, and will depend upon /what exactly/ is generating her heightened state of anxiety.          

    Note: i have to say that despite your daughter's reading age, there is a suspicion in me that your daughter is not stupid, to put it frankly, and that it would be erroneous to presume purely on the basis of her reading age that other cognitive faculties are equally 'retarded' - and i use this term in the frankest possible way. she may have highly developed senses of sensory empathy rather than cognitive, and be very highly developed in areas such as visual organisation etc. therefore i would suggest she knows exactly what is triggering her, but lacks the capacity to explain herself in a manner which can be understood by those NT's around her. it may simply be a case that she is overwhelmed and her mind at the present is scrambling to organise a way to express what she feels, this is resulting in an almost infantile reaching out for reassurance which is being read as 'demand for attention'.

    the constant demand for attention - i do not view this as attention seeking and demanding in the conventional sense (nt - neurotypical sense) but rather as her seeking some kind of alleviation of her hightened state of anxiety. she is asking for help, but not being understood (as is often the case with autistics, we keep it all under wraps when it comes to details because to explain is too complicated, all we can do is make a plea which is often miscontrued or misunderstood). i therefore propose that your daughter is asking, in her demands for attention, for reassurance. she is going to the person(s) who in the past have offered, in the most simplistic terms, a feeling of safety. imagine if you will that a child falls over and scrapes their knee, they seek reassurance in the first instance from those they trust to give positive assurance everything is okay and also, the tools with which to 'solve' the problem. in the case of a scraped knee, it would be a plaster, a reassuring hug that all is okay, and that the fall was nothing to worry about. obviously in the case you outlined (and without more details i can only make a somewhat educated/experience informed stab in the dark) i read your daughter's behaviour as one of requiring anxiety alleviation and reassurance.

    reason ~v~ argument - in connection with above Note, i would suggest that the arguments are as a result of a disparity between what is understood and what is being said. think of this in terms of 'language'. you as NT speak one dialect of a language, your daughter being autistic speaks a different dialect. these dialects both sound like english, but the inherent /meaning/ in the words is being lost in translation. what occurs then is a build-up to confrontation, argument etc. because both parties are trying to be heard but both are suffering not being understood. what appears as 'irrational' thinking on behalf of your daughter, is in fact (and especially in terms of the being sick and therefore not eating) is purely logical. she is finding a solution that alleviates her stress, but is then faced with the stress of being told she must eat. she is in fact, in a no win situation, with the added pressure from her parental (trust) support system which she will, invariably, want to please and not upset and do her best for.

    possible solutions:

     1. speak to your gp regarding your own levels of stress as you evidently need support and more information regarding autistim in adolescent children. your gp may be able to refer you, or there may be local support where you live that can give you either support at the school or can discuss strategies with you. the more you are equipped with the right information, and if appropriate coping strategies, the less stressed /you/ will be, and that in turn will be able to help your daughter.

    2. structure - having structure and routine sometimes helps autistics. as school is very structured, this is 'known'. as homelife can be unstructured, it can add extra pressure. perhaps explore the idea of adding more structure into the homelife, one which your daughter can refer to if she needs to, similar to a school timetable eg. home at 5pm. quiet time and homework for 20mins. play time for 10 mins. evening meal at 6pm.

     also within this structure, time could be allocated for you as a family to have one-to-one time. this time will be absolutely focused on discussing your daughter's needs, her day at school, anything she is worried about or anxious about. obviously, to make this an interrogation time eg. tell us what's wrong, what are you anxious about? will not achieve anything productive, so better this one-to-one time be more of a 'stepping outside of the rat race/quiet time' where there can be a sitting down with a cup of tea perhaps? what is also beneficial is that this is not done at the dining room table, as associations of food etc. will arise. often, autistic people need a 'safe space' they can go to which is on their terms (there are lots of examples on the internet for children). it might be an idea that if your daughter had a 'safe space', she can go to this when she feels anxious about things. in the safe space she can have things around her that make her feel secure. this safe space could be in her bedroom, or it could be elsewhere in the home. when she is there, you will then know she is having one of her 'anxious moments' and also, during the 'one-to-one' you will then be able to step into that space and /listen/ to her on her terms, even if you don't understand what is being said. offering solutions will not work, she ultimately needs to come up with solutions herself, but good advice given with positive reinforcement is all one can do. she will get there and manage her anxieties if she feels she is not being controlled by them or lacks the abilities to deal with them (which is my ultimate suspicion here)

     

    also: is school really going that swimmingly? i ask this due to her age, and also like the Note above, suggest as something to think about that as she is reaching an age when her peer group may be developing non-verbal social skills, she may be aware she is struggling to keep up, or she is aware that there is something not quite right. as autistics, we are more perceptive than people give us credit for, even if we don't understand what we are perceiving, we are still subject to their effects.

    similarly, if there have been any changes in homelife recently, this could also have generated anxiety. change, whatever change that may be, either to our bodies, our environments, the people around us, even if it is in the distant future and we are aware change is coming, all these things can add to our levels of anxiety.

     

    and finally a word about control. control is very important for autistics, the need to control and be in control. control is not about power in the conventional sense, but about security and reassurance. please bear this in mind, as it is evident to me that your daughter's reaction to the travel and the sickness, is about control and reacting to events which are out of control. this insecurity may be manifesting and caused by other factors, perhaps even puberty, which of course can be quite frightening if not understood fully. we tend to feel subjected to events rather than merely experiencing them if we do not fully understand them or have the emotional or cognitive 'tools' in place with which to manage them. autistics are very black and white thinkers, after all.

     

    i hope the above gives some food for thought. it's all i can offer at present.

Reply
  • hello 'frazzled'

     i am autistic. please take all which follows as open opinion. i am no paediatrician. i will however attempt to a) give insight from the autistic perspective b) offer possible solutions/perspectives

     anxiety - anxiety is part of the autistic landscape. it arises when we become overloaded by either changes to our environment, or as a result of excessive stimulus. your daughter, despite being well behaved at school, is by the sound of it suffering from anxiety. this is manifesting at home because, i suspect, she is holding herself together in the school hours, and then when at home, all that she's bottled up is coming out. this is a good thing on the one hand, in that she can let it all out, but obviously not so good for you being on the receiving end of it. also, it's not so good that she is at this level of meltdown down and perhaps could do with some forms of intervention. intervention could come in several forms, and will depend upon /what exactly/ is generating her heightened state of anxiety.          

    Note: i have to say that despite your daughter's reading age, there is a suspicion in me that your daughter is not stupid, to put it frankly, and that it would be erroneous to presume purely on the basis of her reading age that other cognitive faculties are equally 'retarded' - and i use this term in the frankest possible way. she may have highly developed senses of sensory empathy rather than cognitive, and be very highly developed in areas such as visual organisation etc. therefore i would suggest she knows exactly what is triggering her, but lacks the capacity to explain herself in a manner which can be understood by those NT's around her. it may simply be a case that she is overwhelmed and her mind at the present is scrambling to organise a way to express what she feels, this is resulting in an almost infantile reaching out for reassurance which is being read as 'demand for attention'.

    the constant demand for attention - i do not view this as attention seeking and demanding in the conventional sense (nt - neurotypical sense) but rather as her seeking some kind of alleviation of her hightened state of anxiety. she is asking for help, but not being understood (as is often the case with autistics, we keep it all under wraps when it comes to details because to explain is too complicated, all we can do is make a plea which is often miscontrued or misunderstood). i therefore propose that your daughter is asking, in her demands for attention, for reassurance. she is going to the person(s) who in the past have offered, in the most simplistic terms, a feeling of safety. imagine if you will that a child falls over and scrapes their knee, they seek reassurance in the first instance from those they trust to give positive assurance everything is okay and also, the tools with which to 'solve' the problem. in the case of a scraped knee, it would be a plaster, a reassuring hug that all is okay, and that the fall was nothing to worry about. obviously in the case you outlined (and without more details i can only make a somewhat educated/experience informed stab in the dark) i read your daughter's behaviour as one of requiring anxiety alleviation and reassurance.

    reason ~v~ argument - in connection with above Note, i would suggest that the arguments are as a result of a disparity between what is understood and what is being said. think of this in terms of 'language'. you as NT speak one dialect of a language, your daughter being autistic speaks a different dialect. these dialects both sound like english, but the inherent /meaning/ in the words is being lost in translation. what occurs then is a build-up to confrontation, argument etc. because both parties are trying to be heard but both are suffering not being understood. what appears as 'irrational' thinking on behalf of your daughter, is in fact (and especially in terms of the being sick and therefore not eating) is purely logical. she is finding a solution that alleviates her stress, but is then faced with the stress of being told she must eat. she is in fact, in a no win situation, with the added pressure from her parental (trust) support system which she will, invariably, want to please and not upset and do her best for.

    possible solutions:

     1. speak to your gp regarding your own levels of stress as you evidently need support and more information regarding autistim in adolescent children. your gp may be able to refer you, or there may be local support where you live that can give you either support at the school or can discuss strategies with you. the more you are equipped with the right information, and if appropriate coping strategies, the less stressed /you/ will be, and that in turn will be able to help your daughter.

    2. structure - having structure and routine sometimes helps autistics. as school is very structured, this is 'known'. as homelife can be unstructured, it can add extra pressure. perhaps explore the idea of adding more structure into the homelife, one which your daughter can refer to if she needs to, similar to a school timetable eg. home at 5pm. quiet time and homework for 20mins. play time for 10 mins. evening meal at 6pm.

     also within this structure, time could be allocated for you as a family to have one-to-one time. this time will be absolutely focused on discussing your daughter's needs, her day at school, anything she is worried about or anxious about. obviously, to make this an interrogation time eg. tell us what's wrong, what are you anxious about? will not achieve anything productive, so better this one-to-one time be more of a 'stepping outside of the rat race/quiet time' where there can be a sitting down with a cup of tea perhaps? what is also beneficial is that this is not done at the dining room table, as associations of food etc. will arise. often, autistic people need a 'safe space' they can go to which is on their terms (there are lots of examples on the internet for children). it might be an idea that if your daughter had a 'safe space', she can go to this when she feels anxious about things. in the safe space she can have things around her that make her feel secure. this safe space could be in her bedroom, or it could be elsewhere in the home. when she is there, you will then know she is having one of her 'anxious moments' and also, during the 'one-to-one' you will then be able to step into that space and /listen/ to her on her terms, even if you don't understand what is being said. offering solutions will not work, she ultimately needs to come up with solutions herself, but good advice given with positive reinforcement is all one can do. she will get there and manage her anxieties if she feels she is not being controlled by them or lacks the abilities to deal with them (which is my ultimate suspicion here)

     

    also: is school really going that swimmingly? i ask this due to her age, and also like the Note above, suggest as something to think about that as she is reaching an age when her peer group may be developing non-verbal social skills, she may be aware she is struggling to keep up, or she is aware that there is something not quite right. as autistics, we are more perceptive than people give us credit for, even if we don't understand what we are perceiving, we are still subject to their effects.

    similarly, if there have been any changes in homelife recently, this could also have generated anxiety. change, whatever change that may be, either to our bodies, our environments, the people around us, even if it is in the distant future and we are aware change is coming, all these things can add to our levels of anxiety.

     

    and finally a word about control. control is very important for autistics, the need to control and be in control. control is not about power in the conventional sense, but about security and reassurance. please bear this in mind, as it is evident to me that your daughter's reaction to the travel and the sickness, is about control and reacting to events which are out of control. this insecurity may be manifesting and caused by other factors, perhaps even puberty, which of course can be quite frightening if not understood fully. we tend to feel subjected to events rather than merely experiencing them if we do not fully understand them or have the emotional or cognitive 'tools' in place with which to manage them. autistics are very black and white thinkers, after all.

     

    i hope the above gives some food for thought. it's all i can offer at present.

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