Parents, carers and disabled parents
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Autism Alert bracelets?

NaomiNaomi Member Posts: 29 Listener
I took my son on a long bike ride yesterday. We had a lovely time apart from the usual bumps along the way such as multiple seizures, bellows and peeing on a shop floor....and it occurred to me that I would love a bracelet just to remind myself, never mind anyone else, that I'm doing an amazing job!

Replies

  • socksoffsocksoff Member Posts: 32
    Whenever I go out and about with my son, who can get screamy and shouty or laugh at children who are crying or reach out to touch people, I get comments, looks and stares - nearly all hostile. When I talk to friends who have children who are physically disabled and in wheelchairs, they can't believe how rude people can be. I am not advocating a wheelchair for my son. However, I do wonder whether some simple signifier might be helpful - such as a wristband perhaps in the Netbuddy colour so that it became universally recognisable? There are various things available including the autism alert cards but although I have carried these in my purse for years, have yet to give one to a stranger at the right moment. There are some bracelets and Tshirts on the internet too but I think it would need some co-ordinated campaign behind it from groups like the NAS, Netbuddy, Dimensions, Ambitious About Autism etc. When I have been calm enough to explain my son's condition to tutting strangers, generally they have been apologetic, and 'I didn't realise' - which is true. It would just be so nice to pre-empt those stares! Would love to know what people think....
  • AlistairAlistair Member Posts: 104
    I think/hope you've started a really interesting debate and I, too would be very interested to hear what others say ......
    Here is my opening thought What is normal?
    Really society needs to be educated.....where do you draw the line? I get the 'looks' especially as a male dealing with a challenging teenage daughter...but I don't want her 'labeled'. I have high expectations for her and from the people she comes into contact with. I also understand how remaining calm and explaining things helps and how hard that can be. Often you are just not given the opportunity.
    I really hope lots of people contribute to this dilemma..Well done socksoff !
  • socksoffsocksoff Member Posts: 32
    Thanks for that Alistair and I agree about our expectations of our children and of society but I think we are not in an advanced state yet - unfortunately. I don't particularly want to label my son but by keeping quiet, hiding his disability and hoping that he will be able to conform to social expectations perpetuates the problem and I end up not wanting to leave the house ever again with him or take him out in public. He screams very loudly in response to noisy, crowded places and while we are working on the behaviour, it is not going away at the moment. I suppose when I have been able to say that he is autistic, people have usually said, 'oh, sorry I didn't realise' etc and been really understanding so am just trying to bridge that gap but really welcome this debate - thanks for posting.
  • BombproofBombproof Member Posts: 3
    How about wristbands/badges for parents/carers? Some sort of signifier that says "I'm doing an amazing job". The majority of even the most unaware and ignorant of the population will twig if they see a careworkers lanyard or name badge so maybe us parents should wear our professional qualifications on our sleeves too?
  • NaomiNaomi Member Posts: 29 Listener
    Yes!!! The wristbands with I'm doing an amazing job is a fantastic idea. I find the stares, comments etc very demoralising. Most of the time I'm oblivious, but if im operating on only a few hours sleep, or my son has had a very bad seizure, or I'm worried by his future, or here's a thought, I just want to take him for a walk without being stared at then you can end up feeling very low indeed. I do try to stay calm, but last weekend I found myself poking my tongue out at a woman who was clicking in disapproval at my son pressing his nose to the window of a cafe. Waving a wristband at her would have been much more mature!
  • socksoffsocksoff Member Posts: 32
    Thanks Bombproof and Naomi - I love those ideas too! And it's true that carers have their lanyards etc. I once tried to pretend (to myself) that I was a carer for my son rather than his mother to see if it felt any different!! Tried to imagine I was doing a good deed for a friend - it made me feel better briefly! But I am sleep deprived and losing the plot!
  • MixxiMixxi Member Posts: 29
    Really good topic - thanks socksoff.
    I confess that my response to this situation is directly related to how stressed and tired I feel at the time.
    I'm with Alistair on identifying the young person. This partly because of having high expectations but mainly because my son resents it. I tried a couple of "identifying" strategies but it didn't take long for him to work out what was going on and rebel. It made me feel really uncomfortable.
    Sadly, my son's awareness does not extend to other people's discomfort. So, if it is necessary, I will give a short explanation to the person affected - varied according to the situation. "My son has communication difficulties", "My son really likes your windows", "My son is autistic" or sometimes …. "Don't worry, he's bonkers" (not PC, I know but can diffuse the tension)
    Lately, my boy has taken to shouting out random phrases for example "Shouting Williamson!" or (alarmingly) "Don't stroke the children!" For these situations I find that I just verbally respond to the shout depending as though we were having a conversation i.e. "Williamson!" or "Good advice son! No children stroking for me!"
    I appreciate these strategies would not be right for everyone but after the extensive public sexual harassment I suffered in my 20s and 30s, I must say that I find the change of focus rather refreshing - it is so much easier to defend someone other than yourself.
  • NaomiNaomi Member Posts: 29 Listener
    Thank you Mixxi for your post, i loved your description of your son shouting random phrases! sometimes our lives as carers feel so surreal, you couldn't make it up. And yes, it is much easier to defend a loved one than yourself, although I can find that part of the problem, I think my son is so amazing and so brave that I feel very annoyed at any less than admiring glances.
  • AlistairAlistair Member Posts: 104
    I am so sorry that some of us find it hard to get out of the house because society makes us feel ashamed of our lovely children. It can be so much easier to put on the same DVD (how many times can they watch it? I think I know every line in 'School of Rock' even though I've never sat down and watched it in it's entirety!)
    I've got used now to walking round the supermarket with my very pretty daughter randomly saying 'You've got smelly armpits' or 'cake' or if she's cross with me bashing me with her handbag! (some of you may know that the hand bag thing is new and is carried thanks to advice gleaned from this lovely website).
    I want to throw something else into the melting pot...how do you react/respond/help when you see another parent trying to cope with....well you know it could be anything!??
  • DoctorDoctor Member Posts: 5
    Amazon sell "autism awareness" wristbands and NAS lapel pins. Always wear wristband when I am out with Mr Noisy would like him to wear too , still working on that one!
    Good luck.
  • James12James12 Member Posts: 1 Listener
    edited March 2017
    A lot of websites sell awareness wristband. As we all know 2 April is coming and a lot of organization  celebrating this day for fundraising. I am also associated with an NGO. Everyone must know about actually what is autism lots of people even don,t know about  autism.We should spread awareness about this by through wristbands, bracelets.
  • [Deleted User][Deleted User] Posts: 689 Listener
    edited March 2017
    The user and all related content has been deleted.
  • bendigedigbendigedig Member Posts: 254 Pioneering
    I'm not Ashamed of my Autism.  Im not ashamed about my sons Autism either.  I am however ashamed to live in and be a part of a society that would want to try to make me, my son and others like us "ashamed"

    If my son has a melt down,  Im concerned about my son!  I couldn't give a FLYING FIDDLE what anybody else is thinking at that moment.

    Do I think that we as parents of children with ASD should wear bracelets?  Well I suppose the police are always wanting to slap bracelets on people with ASD so why not?

    It doesnt matter what other people think about somebody elses behaviour, it isn't their bussiness.  It is not their place to sit in judgement or to approve or disapprove of what they see!  What qualifies them to have any say anyway?

    If you ask me, any adult who starts acting out because of a childs behaviour is abnormal!  Perhaps they should wear the bracelet to let us know when we need to be on **** alert?
Sign in or join us to comment.