Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
Desperate to find people to talk to about everday PDA stress
  • Sue F-J
    Posts: 5
    Hi, my name is Sue and I'm new to the forum.

    I'm having one of those - "why me" days. I have a 5 year old son diagnosed with PDA last year. Although the diagnosis explains his behaviour - it certainly doesn't help with day to day management! :( .

    This morning, my son refused to get up - refused to eat breakfast - or get dressed for school. This is a common battle every morning - but usually I find an ingenius way to get by!!

    Today however - he seemed to be in mega avoidance mode with full on aggression - hurling missiles at me, shouting verbal abuse - the usual stuff. I feel so useless at times to do anything to alter his behaviour. I even sat and cried and he called me a cry baby and threw cushions at me. I feel exhausted and like a failure as a mother at times.

    I would be grateful for any words of advise, encouragement or shared experiences.

    I would love to be able to meet parents close to me - in Lincoln for a chat.
  • dirtmother
    Posts: 897
    Welcome Sue, you are not a failure!

    Have you read The Explosive Child by Ross Greene? I found it a really helpful book - not on the whole because it told me anything I didn't already know but because of its acceptance that some days/times the meltdown *is* just going to happen, that strategies don't always work (and sometimes things are non-negotiable and you just have to push through the meltdown - in a sense *choosing* for it to happen. I find that helps, to feel I have *chosen* to have a battle rather than have it foisted on me - but I'm sure that's not how it was for you this morning!).

    It's a tremendous challenge to have to come up with something ingenious quite so often - maybe you've just run out of strategies (but the same ones will come in handy another time). Perhaps you could see this as a validation of how expert you are in dealing with him because he has PDA and he *isn't* this bad every day? I felt the book helped me to realise that whilst there wasn't a magic answer, we were already doing a lot that prevented things from being any worse than they had to be.


    I think it is pretty scary for children to get their parents in a state and it can manifest itself in anger and general nastiness - they certainly don't look or sound scared but I think they are. Does he respond at all well to hugs and kisses? I can sometimes get my son to break out of his rage for a moment with "Have you got a kiss for your Mummy?" Makes me feel better and him too sometimes.

    Is he tired at the end of the first week after half term? Is he coming down with something? TGI Friday eh?
  • Sue F-J
    Posts: 5
    Thanks dirtmother for your reply,

    I will definitely get hold of a copy of "The Explosive Child". I think the aggression and violence are the hardest things to cope with. I have learnt to accept that it is not a personal attack on me and any hateful words are not meant. We do have some wonderful times too!

    I agree with what you said about that sometimes a meltdown "is" inevitable and has to happen. Sometimes it seems that he needs to blow his top to be calm again. Once he is in a rage I have used silly getures to make him laugh or copy his moves which sometimes works. However sometimes you just know that nothing will work and he then wont calm down until he gets hurt - even then it may start again!

    After a major meltdown, my son will usually appolpogise and we have hugs and kisses. He can switch between being "Mr Nasty" and "Mr Wonderful" in seconds as if nothing just happened!

    Going back to school after a break ia always traumatic - even going back on monday morning after the weekend. Thinking about Friday morning - he may well have been exhuasted and confused about what was expected of him as he had a reading book the night before which he refused to read, adamant that he did not have to and screwed it up in a rage. After getting to school late on Friday I spoke with his teacher who is very understanding. She spoke to him in front of me about his reading and we agreed he would choose his own books to read.

    Thanks again for the comforting words. The weekend has been better! Although I'm better supported when other people are here with me to take the strain

    I feel happier knowing I'm not alone. :)
  • webbwebb
    Posts: 2,566
    Hi Sue
    Sorry I wasn't around last Friday, sounds like you had a really bad morning with your son although I suppose you could have had more by now but I hope not!
    Just wanted to say welcome to the forum and I hope you find plenty of people to talk to on here.
    There is a "meet up" planned begining of August if you want to join some of the mums from the forum. I am from Nottingham and have a 13 yr old with PDA and a 16 yr old with Aspergers and would love to talk anytime.
    You sound like a great mum and you definately are not a failure! You have managed to get a(rare)diagnosis for your son and are in good communication with your son's teacher. These things don't come easy and your son is only 5. You are doing very well!
    Do you have much help with your son? Do you need a "Statement of education" for support at school with your son?
    PDA is a very complexed disorder and it takes time to really understand your son and know what makes him tick, my son is 13 and still catches me off guard!!!
    Take Care
    Paula
  • Sue F-J
    Posts: 5
    Hi Paula,

    Thanks for the kind words.

    Having other people to talk with who really understand what living with PDA is all about is great. The forum is an excellent idea. I can already see that PDA is very comlex and hard to explain to other people! And, just when you think you've found something that works - it doesn't anymore!

    My life has changed quite dramatically in the last 12 months form working full time - to part time and now not working at all. It gives me time to take a step back and try to do things differently. But the downside is I have lost contact with supportive people.

    I would love to join in with the "meet up" at the begining of August if you have any details?

    My son's teacher at school is very interested in him and has attended a session about PDA. However, the PDA behaviour is more apparent at home. At school he puts on a quiet act! He is suspected of being dyslexic and is on school action plus at the moment. He has difficulty with reading, writing and real problems with numbers. The school don't wish to pursue a statement as they say he doesn't meet the criteria! I think because he's not disruptive and naughty at school.

    I don't get any help as such at home which is the hardest. My husband is supportive but I do the hard tasks - getting him ready for school and bed! I have an older daughter who will babysit occasionally for us to go out - although my son does make her life difficult! She belongs to a young carers group which is an excellent outlet for her. Unfortunately we don't have parents or family locally to have time away from our son - which would be such a bonus. It is limiting as to what things we can do as he hates crowds and big shops which my daughter likes! I think my relationship with my daughter has suffered as my son doesn't allow us to have time together when he's around. She finds his aggression, violence and obsessive hounding very upsetting at times. There are no clubs or respite services for my son. The thing I find hardest to deal with is morning and bedtime routines and the aggression and violence. I've been scratched, bitten, head butted, had my lip split, head injuries, cuts bruises - some quite severe. My son also hurts himself - punching, head banging, kicking, punching, accidents during rages. He has also stabbed my daughter with a blunt knife! He's pretty scarey at times and he knows it! But he can also be so helpful and such a sweetheart!

    Thanks again for replying

    Sue
  • webbwebb
    Posts: 2,566
    Hi Sue
    Good to hear from you.
    There is a link headed "Possible Summer meet up with one over night stay" under "General Discussion" started by "Bambi" where you will find details for the meet up.
    I have never been able to return to work as my boys and their schools/professionals keep me on my toes! I have a son PDA 13 and a son Asperger's 16 and a daughter 17. Although my husband is supportive, in the early years he would never look after our sons. I have had to make him help me with them so that I had some quality time with my daughter. Once a fortnight we would go out together on a Sat. and just do girly things, she really appreciated it. When she got to 15 she preffered to go out with her friends but I'm glad we made the effort before that. My daughter had to spend alot of her time locked in her bedroom as the boys are very aggresive and would either trash her room or fight with her.
    I know what you mean about PDA and the violence and aggression! I also find the mornings and bedtimes the worst! We all have awful battle scars!
    The only place we have been able to get help from is Social Services. Maybe because our PDA son is in a special school and our Aspergers son is at home, tutored by the LEA. There are two of them and at the time we applied I was having a severe bout of depression. We contacted the "Childrens disability section" and asked them to do a core assessment on our family. We now have a worker for each child. One has 4 hours per week, the other 2 hours. Maybe its worth you ringing them? I realise social services help differs from county to county.
    A lot of PDA children are passive at school yet "challenging" at home, that can make life hard for parents as school and professionals don't always believe the parents.
    I was very interested in the paragraph about your sons difficulties at school and poss. dyslexia. Although it wouldn't be unheard of for a child to have PDA and dyslexia, I was just wondering if school have check out that its he "can't do it" rather than he "WON'T DO IT". It could be that he's avoiding doing the work! Just thought this was worth a mention.
    I can see why they have said no to Statementing - I think you're right though, it may be because he's not disruptive in class. Do you know how far behind he is in Maths and Reading?
    Think I'll stop, hope you don't mind my honesty!
    Take Care
    Paula
  • mango69
    Posts: 967
    Hi Sue, welcome to the forum, you are in good company here - my son is disruptive and avoidant at home and school but the mornings and the bedtimes have always been the worst times for us. It has become gradually a bit easier though over the years (or am I just coping better!). How right you are when you say when you find something that works it only lasts a short time - we still have to find different methods for getting his clothes on and most of the time my brain doesnt work fast enough. One thing I found helpful was trying to get him to come up with interesting ways to help him get his clothes on - he sometimes buys that and his brain is definitely faster than mine. Bedtimes have been made easier with mp3 player and nintendo ds but he regularly goes off them. When certain things stop working I put them away for a while and bring them out a month or two later. Once the moderator problem gets sorted out you will then be able to access the parent forums which are full of tips and stuff to browse through - in the meantime use the general forum or private message me if there's stuff you dont want to discuss publicly.
    Margo
  • Amanda
    Posts: 281
    Hiya, well what a day for me to say hi, my own son is definitely not a happy boy today. I have Mark who has PDA and James who is Aspergers and is hyperactive. I also have a daughter Gemma who is nearly 20 and has flown the coup and finds coming home too stressful to do very often.

    Mark is agressive although over the years we have been able to make life easier by managing the environment more effectively. The damage is now confined to his bedroom but because that is his space and we never invade it. That way we can enforce the rule, we don't invade your space so you can't invade ours. Mark was dormant at school for many years, bringing most od his aggression home but as he's grown 'bigger' nad taller than his teachers he is agressive at school now and difficult to handle, he goes very much along the rule that if If I'm bigger than then you cant tell me what to do. I'ts hard.

    However you are not alone and hopefully we will get to meet at the meet up too


    Mandy
  • Welcome to the other planet - the world of PDA!
    My son Lee fluctuates daily from being 95% "normal" to full PDAism at the flick of a switch. Outings are a nightmare (even treats) as he gets fidgety and agitated and starts being abusive, I have had to apologise more times than I care to count for his behaviour as he looks perfectly normal to the unsuspecting "Joe public". How could this seemingly adorable little boy be such a monster.
    I have often thought 'why me' and am I being punished and on more than one occasion been just as nasty back to him only to dissolve in tears and have him do the same because it upsets him to see me cry.
    I have had 6 other children that are "normal" (Lee being no.6) so life is very stressful and chaotic. But we are learning together as a family - what works in some instances doesn't work in others - and everyone is constantly on their toes so to avoid any 'epsiodes' of Lee's dark side.
    Just take comfort in the knowledge you are not alone - its the same for all of us and take strength that my sympathy goes to you when the days seem endless and the nights go into infinity.
  • tracyhb
    Posts: 2
    [img]Hello, my name is Tracy. I also have a son of five, who has Asd and the term Pathological Demand Avoidance, is my son to a tee. Since reading all your posts, it has answered a lot of questions for me. I was so surprised to read the traits of this syndrome and how my son was also difficult to handle in the morxings and at mealtimes. I am amazed to learn of the different strategies, families are using to try to persuade the child to adhere, to simple everyday tasks. Only to realise that I have been doing this all along, just didn't know why I was still doing it. I have ordered a few books off amazon and look forward to learning about what to do next, as soon as possible.

    I am also feeling overloaded, but truly believe the child finds it hard to conform. I am home teaching and he is doing very well, compared to where he was a year ago. He goes to playcentre a few days a week too. He plays snooker. Likes numbers, and understands maths. Good reader, blah, blah, blah, but everything has to be on his terms. He has to be first. Will fight to the limit to get what he wants. I too have adapted my home to deal with his tantrums. eg. putting thngs out of site before bed or a meal, planting surprise objects to try to change the subject. Putting all toys up high, so he has to ask for things, and leaving schoolwork around in our den, for him to inadvertently see and decide to participate it in. If I say no, lets do this instead, then he desperately wants to do his choice and he will sit down and do some of the schoolwork. It really hard work, you need a village to bring up children like ours. it is just exhursting. I look forward to keeping intouch.
    from Tracy, mum to d/s Peter, age 5.
    [/img]
  • Amanda
    Posts: 281
    Hi Tracey, I think we spoke on the phone yesterday. I'm so glad you've joined the forum where you are most definitely among friends, welcome

    Mandy x
  • westd_Moderatorwestd_Moderator
    Posts: 1,292
    Hi Tracey and welcome to the forum :)
  • webbwebb
    Posts: 2,566
    Hi Tracey

    Just wanted to say hi and welcome to the site. Hope you find lots of info to help you parent your son Peter.

    Good to hear you have managed to get a diagnosis for your son at the age of 5, early diagnosis is helpful for future progress.

    Take Care
    Paula
  • Lixina
    Posts: 289
    I have PDA and I can certainly relate to your son's behavior. Particularly the aggression when you start crying - when my mother starts crying about my behavior I feel guilty but trapped in that behavior so it shows up in trying to shame her out of acting that way (or sometimes, I can just withdraw).
    About the only thing that helps me during those meltdowns is to get cuddled and reassured and have all pressure removed until I calm down again. I know it's hard for the parent to do, especially when they're really upset too, but that's all that works for me. Often I have meltdowns in the morning because I'm overloaded from the pressure to do everything quickly, and ironically, the more my parents try to hurry me up, the more I slow everyone down. I also have separation anxiety so even though I'm 19 and can be left home alone, when I'm having a meltdown I can't stand to be alone. I'm so scared that without their help I won't be able to calm down, or that I will calm down and then forget what the problem was and just be left feeling unsafe without knowing why.
  • lyngully
    Posts: 42
    Hi, I am also glad I found this group. My daughter is seven, and was diagnosed as having ADHD and ASD 17 months ago. Her life really fell apart in her second term at school, until then we just accepted her being a bit different, lively and stubborn.
    I read about the syndrome just prior to her Ed. Psych. assessment last month. As I read the report, alarm bells started ringing. I could see similarities between her behaviour and the syndrome. The more pages of this website I read, the more convinced I became that this is at the heart of her difficulties. At the moment I'm unsure if a diagnosis would be useful for her, just knowing the difficulties & strategies and being able to use them is helpful. Also I'm not sure how her Consultant will feel about me suggesting the idea, as it seems that some professionals do not recognise it as a separate condition. Her SENCO has taken on board my sugggestion to look here for help.
    The posts I have read on this noticeboard also sound so familiar, she is an expert at dawdling, distracting attention and procrastinating. She also has sensory difficulties, we are awaiting an occupational therapy assessment.
    I'm also a strong advocate for Ross Greene's book, The Explosive Child. It has been a real lifesaver. I'm glad I found it so early on in my quest to understand her and how her brain works. She is the youngest of three and the parenting skills used for her siblings just did not work with her, I had no idea why.
    I'd really appreciate helpful suggestions with supporting her extreme difficulties with clothing. Specifically clothes she perceives as itchy, reluctant to wear layers or new clothes (loads of unworn clothes). Also how to cope with her very limited diet, and strategies to encourage her to try new foods.
  • webbwebb
    Posts: 2,566
    Hi lyngully

    Great to hear you have read about PDA and can recognise your own childs behaviour relates to this syndrome.
    Really pleased you have posted on this site and I hope lots of us will be able to help you along life's journey with your daughter.
    I have heard of quite a lot of children who initially get given a diagnosis of ADHD (and ASD)who actually have PDA.
    You are right that many prof's do not yet know about PDA or do not understand how to diagnosis this syndrome so they don't bother to give a more accurate diagnosis.
    Give things a bit more time, maybe you will be able to present the criteria for PDA to your daughter's prof's when you fully understand all the aspects of PDA.

    Both my sons are on the spectrum and have very limited diets, we have had referrals to dieticians etc. but apart from telling us where my son's diets were deficient they could offer no further help. The only way forward with one of my son's was to let him taste my dinner now and again.

    With regard to clothes.......Cut out all labels, try loose fitting, cotton clothes, but the fact is your child will have her own likes/dislikes.
    My son will not wear collars or anything with buttons, only elasticated trousers, detests socks but has to wear them Oct-April....I could go on and on. So tell me more about the difficulties she has with clothes. If school uniform is the problem, you must talk to the school and tell them she is ASD with sensory dysfunction and must be allowed a variation on the regular uniform. They may be helpful?

    Hope I can help you further
    Take Care
    Paula
  • Garden
    Posts: 329
    Hi there

    I have a nine year old girl with PDA. She has very strong ideas about what clothes she will and won't wear and we often buy things that don't get worn - she likes to wear the same things over and over. Luckily for me she quite likes her school uniform, but she has to have the 'fashion' blouses rather than the standard ones (luckily her school allows this). I have completely given up ever buying her anything without her approval - even then she may just never get round to wearing it. But there's just no point in surprising her with a nice gift of clothes as the very fact that I have presented her with sth is enough to trigger her PDA tendencies and so, even if she likes the item, she just can't wear it (at least that's how I interpret what's going on for her).

    Sometimes she goes out wearing things that other people may have an issue with - I have had to get used to that. This week there was a performance of 'The Lion King' at her school drama club and she told me she had to wear a yellow t-shirt. The only yellow t-shirt we have that she would remotely contemplate wearing is a ra-ra type with spaghetti straps - it belonged to her sister and it looked cute and jolly on her. But on her sister it looks more sophisticated and not remotely lion-like. All the other kids were wearing bog-standard yellow t-shirts or orange jumpers and our daughter stood out like a sore thumb in this beautiful top. But I knew that there was absolutely no way she would ever agree to wear an ugly yellow t-shirt, no way. I'm sure the other parents think she's inappropriate and a bit tarty to be honest with you, but that's sth I'm just letting float over my head. It's hard though. But bitter experience has taught me that she would just tantrum for hours if I tried to impose the yellow PE t-shirt her sister happily wore last week.

    Re food, I had a lot of sensory issues around food as a child and both our girls are fussy eaters, but in different ways. I think that because it's always been an issue for me, I understand it in my two and so I find it relatively easy to deal with. Our PDA daughter has very simple tastes and she won't eat anything remotely different - so going abroad is alwayst tricky as she doesn't like the food. She will eat things like pasta with cheese or tomato sauce, pizza, sausages, chicken nuggets, jacket potatoes, roasts, fish and chips (but that's about it) and so I tend to work meals around what she will eat. She won't eat rice at all and so we just tolerate that and we don't eat out in Chinese or Indian restaurants as a family. I think it's so easy to get into the mindset that they have to eat this and that, but actually they don't. There are lots of people who have very restricted diets - apparently Simon Cowell won't eat the food you get on the menu in the fancy restaurants he visits, and always gets sth really bland and plain instead.

    I suggest you sit down and really think about all the things she will eat and see where you can go from there. My other daughter, who has loads of sensory issues, will only eat apples and melon when it comes to fruit - so I just buy a lot of apples and melon. I don't even try to get her to eat e.g. pineapple now. Re veg she will only eat green beans and carrots and baby corn, so I just alternate those.

    Hope this helps, regards, Garden
  • lyngully
    Posts: 42
    Hi Paula

    Thank you for your message. I'm so glad to know I'm not alone in trying to figure out how to help my child cope. It can be so difficult. Until I found this forum, I had not met anyone who had experience of severe sensory difficulties regarding clothes. All the advice had been well-meaning but unhelpful. Her reaction to certain items was way out of proportion to the sensation.
    School uniform is not too bad, to a point. This year, when we have bought uniform that she finds comfy and will wear, we have also bought he next size up, in the hope that it will be still acceptable when she grows into it! The school haven't minded when she has worn pink socks! Better pink socks and a happy girl than an unhappy unco-operative girl.
    She is so contradictory with clothes. She likes loose, flowing dresses and skirts, (winter is more of a problem) yet, loose clothes that have belts, ties or waistbands have to be fastened so tightly.
    Shoes are going to be a major problem soon. She likes to fasten the bar so tight, she cuts the top of her feet. The only girls shoes that have a buckle rather than velcro fastening are made by Start Right. Soon she will be growing out of this style. She percieves lace ups as boys shoes, and anything she thinks is for a boy she will not consider.
    Pants and socks, hmmmm. Self-restricting to the point of having only a few pairs of each that she likes. She looks mighty odd at times, she likes socks pulled up and over her knees if possible. The result is that the heel sticks out like a spur above the back of her shoe! The socks are tatty and discoloured. I dread PE and swimming days at school, the thought that her comfy, shabby pants are on show..... I don't want her to be teased. I have tried washing new pants time and again to soften them. Just recently, with the aid of bribery, she has added a few extra pairs to her favourites. One thing we have noticed, is that if she gets dressed almost as soon as she gets up, itchy pants are rarely a problem. Breakfast first then dress afterwards usually means itchiness.
    Regards, Lyn
  • lyngully
    Posts: 42
    Hi Garden

    Thanks for your reply. I had to chuckle about your daughter and the fashionable yellow t-shirt. She doesn't like blending into the background then. Sounds familiar! I sometimes feel my daughter dresses for attention, and because she can look like a little angel (but one that climbs on walls and up trees), no-one is really aware what is going on and must think we are terrible parents. At her school, the children "wear what you like", on their birthday. Simple, or so you would think... Not my girl! Her friend shares the same birthday, and turned up in casual trousers and High School Musical t-shirt. What did my girl choose? Full-blown fancy dress, Princess Fiona from Shrek!! Hmmm. We have been in the City Centre with a butterfly, fairy princess etc. etc. many times, I'm sure she loves the attention. Later today we are going shopping for her dad's birthday present, guess what? She's just put on the dress we bought her, to wear for a recent family wedding. Awww, so cute....
    Alternating her favorite foods is a good idea, thank you. My main concern is that she may not get enough protein. I need to get creative with soya vegeburgers and vegesausages. My husbands' youngest sister was extremely fussy, I had forgotten. She just used to eat Heinz Tomato soup, bread, salad cream sandwiches, Twix and Toblerone. She was small and skinny, but was not hyperactive with it. I'm worried that she is not getting the nutrition she needs as she is always on the go.
    Regards, Lyn
  • webbwebb
    Posts: 2,566
    Hi lyngully

    It sounds like your daughter is very sensitive to touch/texture against her skin.
    Everything you have discribed is very common with my son (well except the dresses!!!).
    He gets so angry with pants and socks, the way they feel, he can try 10 pairs on before he feels OK.
    We buy the same shoes every winter and the same sandals every summer(bigger size each time) and we still have to have them in the house next to the door for 2 weeks before he will contemplate wearing them.
    I'm afraid to admit that sometimes we have had to throw clothes or shoes in the council tip because he has out grown them but will not stop wearing them!
    When I find something he likes, say a certain type of T-shirt, I will buy 5 in his size and then 5 in the next size up etc.
    He's worn the same kind of blue trousers and T-shirts for the last 3 years!
    I wouldn't want to take him to anyones wedding dressed like this but then because of his behaviour I wouldn't take him to a wedding anyway!

    I do sympathise with you, its a hard one to get round and sometimes they can look a little odd or geeky but like you say, we do what makes them happy!

    Paula
  • Lixina
    Posts: 289
    I am very sensitive to textures of clothing as well, especially pants. I can't wear jeans, pants that are tight around the crotch and many other types of pants. I also can't wear underwear or a bra. I used to only wear panties when I had my period, so I could attach my pad to them, but I hated it. When my mother taught me how to insert a tampon I was really glad, because that part of my body is much less sensitive. As for shirts, rough textures, revealing shirts (although that may be due to sexual abuse) and turtlenecks are things I can't stand.
  • Hi Lixina
    Thanks for your reply, it's good to hear from someone who can say how it feels. Definitely some areas are more sensitive than others for her.
    I will remember what you said about tampons, I'm quite sure sanitary pads will be a no-no for her too.
    Regards, Lyn
  • Hi my name is Judith and I have a son who is 10 and was diagnosed at age 5 as on the autistic spectrum but 'not at a level to acheive a diagnosis'. Whatever that means. At this time we just had difficulties with his behaviour at home and school was fine. Subsequently after moving to the junior department he chnaged at school and became really difficult, agressive which resulted in numerous exclusions. He is now year six with a statement - academically bright if yu can actually get him to do any work to prove it - and I would say school endeavour to manage him rather than educate him.

    I am a complete wreck at present as the last few years have taken their toll.

    Someone mentioned this disorder on the Surrey NAS web forum and I looked it up in an NAS factsheet - it is my son to a tee

    And so I now find myself here joining this contact group.

    Any advice & support greatfully received.
  • mango69
    Posts: 967
    Hi Judith - Welcome to the forum,
    You are certainly amongst people who know and understand what you are going through. I have made you a parent member and you should be able to access all the parent to parent forums now.
    Margo
  • Sally
    Posts: 31
    Hi

    I've just been reading all the posts about choice of clothes among our little angels. Max has always been very sensitive to sound and has sensitive smell but I've never thought of him as being sensitive to clothing, however he is very fussy as to what he will wear. He too can be quite the exhibitionist wearing dressing up outfits when it's not really appopriate.

    Before he started reception he could wear what he wanted to nursery which worked well until the last term when I was sorting through some of his brothers old clothes and came across his old school uniform. Well that was just it, from then on he had to wear school uniform to nursery, well that or a full sports kit - socks as well. I sometimes had to be a bit economical with the truth about what colour socks some teams wore. He has always been funny about things that "go" together for example he won't wear his football tops without the matching shorts - with jeans or something which has caused major problems in winter!!

    He has also never worn traditional jumpers as he only likes sports tops or hoodies and just don't get me started on him insisting clothes do still fit him!!!!!!

    I never really related it to PDA, but it's interesting how they can be so similar. Luckily Max still likes his uniform now he has started school so it has never caused a problem.

    Sal
  • It's a pretty classic ASD thing, lots of cutting out of labels and such like. My son has never been at all bothered, even though he is quite 'sensory' in many ways (licks inappropriate things, hypersensitive to smell) - except for his 'cloth' (which is any garment of mine, no problem washing it, but he likes it to smell 'right' and prefers the softer things eg organic) I am fairly fussy about their clothes and prefer natural fibres for them and organic where possible so perhaps we've not really run into much

    School uniform is an interesting one as it is the trigger for a meltdown. I am generally speaking opposed to uniform unless there is a clear evidence based understanding of the purpose (which of course there is for some jobs), it is practical, healthy and ethical (which rules out most school uniforms) - after all, many countries manage to educate their children to a higher standard without it so I fail to understand what weakness UK children have.

    However, I think for my son it may get the protest out of the way earlier and signal a particular code of behaviour which he is prepared to go along with. We were looking at a secondary school which does not have a school uniform (in practice the students came across as more mature and studious, practically dressed for what they were doing and neater!) so we discussed it with the SENCO and she suggested that we might consider making a specified selection for him that is for school. (Sadly our move has fallen apart so he won't be going there)

    He is not like his autistic friend who would prefer to wear school uniform full time (although he doesn't rip it off as soon as he gets in, and he tends to get his school trousers out at weekends (though these are generally navy cords or chinos). He is less fussy about clothes than his (not much) older brother or his cousins.

    Of course *complaining* about clothes is a classic avoidance strategy if they cotton onto it (and sometimes he does)
  • hi sue, I have a daughter with all the above behaviour and some. She has been failed in every school shes been too. But she has the most wonderful charming personality when calm and everyone adores her. Finding the answers, well if you do tell me lol. One thing i can say, you must be a terrific lady mother to have got this far. Id be happy to chat.
    merry christmas....................... fiona
This discussion has been closed.
All Discussions