Mum of newly diagnosed ASD teen with sensory issues - where to find advice?

Hi Longman

Thank you so much for your reply!

Dan has a history from being very young of "kicking off" on his way home from school or after getting home.  At around 8 this was mostly running away from me or my husband on his way home from school, refusing to come back, then on getting home nearly an hour later than we should have, he would rock on his side in foetal position on his bed and would growl and bite if anyone tried to comfort him.  We soon learned he had to have that time, and it's the same with any meltdown.  There's nothing, no physical or vocal comforting that's going to work until he's had time and space.  

I really like your ideas about a chillout zone.  He has only recently taken the huge step of going back into a bedroom (his own this time) as he has slept downstairs for 2 years after not being able to share space at all.  We're not in a house where the kids can each have their own rooms without us parents sleeping downstairs and Dan would insist on sleeping downstairs despite having his own section of a room that he shared with his brother (although his brother was very understanding and careful, it just wasn't enough and when Dan tried to share it turned into panic attacks and tachycardic episodes that hospitalised him.  We moved downstairs and he has now got his own room.  He has decorated it a soft neutral stone grey himself.  For relaxation his first "go to" is the Xbox, which isn't really great for him as he likes COD and other loud games - strange for someone so sensitive to noise!  He also plays music on his phone and turns the lights off with a lamp on.  He's expressed a wish for some mood lighting and help organising.  He is very untidy for someone who gets so upset when he thinks someone's moved something!  Wherever he goes in the house he leaves a trail of food wrappers, mugs, plates, clothes.  I know most parents of teens will say the same but the other two do pick up after themselves most of the time.  You can ask Dan to do it and he will forget (perhaps conveniently, I don't know - he tends to say yes then say he didn't hear you or forgot).  So getting some easy ways for him to at least contribute a little would be helpful.  I am physically disabled (minor but sometimes worse) and my husband is blind, so picking up things off the floor is really important.  I've gone off the subject of sensory issues there though haven't I?

Dan used to have collections of things for comfort.  He had Lego men that he had to have in a certain way on his windowsill when he was younger.  He once burst his brother's eardrum with a Lego umbrella stick/flag pole for moving one!  He also slept with bottle tops in his pillowcase.  As a baby he would over focus on what he could see, to the point of twisting his head round to continue looking at a basic (no singing, no dancing) mobile in his room.  

Nowadays things are different and he has less of the collecting behaviour and more of the obsessive.  An example is his hair washing which he can't go without for a day despite not being very "teenage" in smell and grease levels.  Often he washes it more than once a day - his hair in general has been an issue in other ways, he can't stand having it touched, stroked or cut and fiddles with it a lot (although there is some hand movement around his face and hair that I am concerned is actually a tic).  

He used to wash his armpits three or four times a day, and sprayed Lynx on himself til we could barely breathe, pretty normal for a teen lad I suppose (they always either stink because they care too much or stink because they don't care enough lol).  However, it was in stark contrast to his big brother who if he has a bath you know it must be Christmas!   Now he doesn't notice when he reeks of BO, and I don't mean the general level where it might get overlooked (oversmelled? LOL), but hefty post sports at college stench, even when he sniffs his pits.  I think that I notice him not being able to smell some things while being overly sensitive to others (the smell of oily fish being the worst as it makes him retch).  I do wonder if this is related to the hair washing (he often mentions the yummy new shampoo I've bought and Lynx smells) and wonder what level is "normal" and what is perhaps indicative of smell sensitivity or comfort from certain smells.  It's really hard to separate out possible obsessive behaviours from sensory seeking behaviour.

Another example is his impulsive/compulsive climbing.  He gets what he calls an "instant urge" to climb buildings when he's out with his "friends" (most often a couple of lads from college who are not really friends and somewhat manipulate him and even belittle him).  He says he doesn't know why he does it, he just knows he does it there and then.  He explains being up a-height as being "peaceful" and "open".  I find it hard to determine how much of this is escapism from the social situation (these lads are bigger, tougher, rougher, street savvy, history of behaviour problems, and Dan thinks therefore they are Gods), how much is thrill seeking from the climb itself and how much is the opposite to thrill seeking because of his description.  I do think it might be the ultimate escape, an extension to how he used to run off.  

On a total side note, although I've had the lovely distraction from these feelings that a relaxing Christmas with the kids brought, I find myself looking back at the many people who called Dan an attention seeker, a faker, a manipulative spoiled brat with a gullible doormat mother, all these disbelievers in the school system and the family (including a biological father that luckily Dan and the other kids have no memory of) that ditched him etc with quite a lot of anger.  Is that normal at this stage or am I being totally meanspirited? 

Hi Longman

Thank you so much for your reply!

Dan has a history from being very young of "kicking off" on his way home from school or after getting home.  At around 8 this was mostly running away from me or my husband on his way home from school, refusing to come back, then on getting home nearly an hour later than we should have, he would rock on his side in foetal position on his bed and would growl and bite if anyone tried to comfort him.  We soon learned he had to have that time, and it's the same with any meltdown.  There's nothing, no physical or vocal comforting that's going to work until he's had time and space.  

I really like your ideas about a chillout zone.  He has only recently taken the huge step of going back into a bedroom (his own this time) as he has slept downstairs for 2 years after not being able to share space at all.  We're not in a house where the kids can each have their own rooms without us parents sleeping downstairs and Dan would insist on sleeping downstairs despite having his own section of a room that he shared with his brother (although his brother was very understanding and careful, it just wasn't enough and when Dan tried to share it turned into panic attacks and tachycardic episodes that hospitalised him.  We moved downstairs and he has now got his own room.  He has decorated it a soft neutral stone grey himself.  For relaxation his first "go to" is the Xbox, which isn't really great for him as he likes COD and other loud games - strange for someone so sensitive to noise!  He also plays music on his phone and turns the lights off with a lamp on.  He's expressed a wish for some mood lighting and help organising.  He is very untidy for someone who gets so upset when he thinks someone's moved something!  Wherever he goes in the house he leaves a trail of food wrappers, mugs, plates, clothes.  I know most parents of teens will say the same but the other two do pick up after themselves most of the time.  You can ask Dan to do it and he will forget (perhaps conveniently, I don't know - he tends to say yes then say he didn't hear you or forgot).  So getting some easy ways for him to at least contribute a little would be helpful.  I am physically disabled (minor but sometimes worse) and my husband is blind, so picking up things off the floor is really important.  I've gone off the subject of sensory issues there though haven't I?

Dan used to have collections of things for comfort.  He had Lego men that he had to have in a certain way on his windowsill when he was younger.  He once burst his brother's eardrum with a Lego umbrella stick/flag pole for moving one!  He also slept with bottle tops in his pillowcase.  As a baby he would over focus on what he could see, to the point of twisting his head round to continue looking at a basic (no singing, no dancing) mobile in his room.  

Nowadays things are different and he has less of the collecting behaviour and more of the obsessive.  An example is his hair washing which he can't go without for a day despite not being very "teenage" in smell and grease levels.  Often he washes it more than once a day - his hair in general has been an issue in other ways, he can't stand having it touched, stroked or cut and fiddles with it a lot (although there is some hand movement around his face and hair that I am concerned is actually a tic).  

He used to wash his armpits three or four times a day, and sprayed Lynx on himself til we could barely breathe, pretty normal for a teen lad I suppose (they always either stink because they care too much or stink because they don't care enough lol).  However, it was in stark contrast to his big brother who if he has a bath you know it must be Christmas!   Now he doesn't notice when he reeks of BO, and I don't mean the general level where it might get overlooked (oversmelled? LOL), but hefty post sports at college stench, even when he sniffs his pits.  I think that I notice him not being able to smell some things while being overly sensitive to others (the smell of oily fish being the worst as it makes him retch).  I do wonder if this is related to the hair washing (he often mentions the yummy new shampoo I've bought and Lynx smells) and wonder what level is "normal" and what is perhaps indicative of smell sensitivity or comfort from certain smells.  It's really hard to separate out possible obsessive behaviours from sensory seeking behaviour.

Another example is his impulsive/compulsive climbing.  He gets what he calls an "instant urge" to climb buildings when he's out with his "friends" (most often a couple of lads from college who are not really friends and somewhat manipulate him and even belittle him).  He says he doesn't know why he does it, he just knows he does it there and then.  He explains being up a-height as being "peaceful" and "open".  I find it hard to determine how much of this is escapism from the social situation (these lads are bigger, tougher, rougher, street savvy, history of behaviour problems, and Dan thinks therefore they are Gods), how much is thrill seeking from the climb itself and how much is the opposite to thrill seeking because of his description.  I do think it might be the ultimate escape, an extension to how he used to run off.  

On a total side note, although I've had the lovely distraction from these feelings that a relaxing Christmas with the kids brought, I find myself looking back at the many people who called Dan an attention seeker, a faker, a manipulative spoiled brat with a gullible doormat mother, all these disbelievers in the school system and the family (including a biological father that luckily Dan and the other kids have no memory of) that ditched him etc with quite a lot of anger.  Is that normal at this stage or am I being totally meanspirited?