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asd/autism why are some people (me included) so scared of it???(16 Posts)
I do feel that people are actually scared of the term and I have to say I was too (in the beginning)
My dd does not have an asd dx (yet) but I do feel that eventually she might do as some of her asd traits are getting worse, more obvious as she gets older.
I used to find myself thinking I can cope with anything other than asd/autism and I just don't know why I felt so scared. After learning so much about the spectrum I now know that no 2 people on it are the same and knowing so much more makes me feel more relaxed iyswim. In term of my own dd although she doesn't have the dx I do often think of her as asd as she does have simialrities to lots of asd children but to a lesser degree.
Anyway the point I am trying to make is that I really do feel that people are scared of asd as a label. In dd's unit I know children who are AS/asd but there parents will say there children have dyspraxia (when I know they are not) and I just wondered why really.
I know my fear initially was that autism is a life long condition .
Hope people don't mind me starting this but I really am interested to know why there is such a fear associated with this dx.
I too was ready to face any other diagnosis than autism. Why....no idea! Now, as I see how the therapies devised for helping with ASD are improving my ds's life, that fear has melted away.
I'm not sure Blossom, but I feel the same way to an extent - it is partly the lifelong aspect, but there are lots of other lifelong conditions that don't have the same taboo.
I think my main fear, when we first found out, was that I was not going to have a real, emotional relationship with ds......that somehow he would not feel things in the same way as us, or be able to communicate them. Thankfully that hasn't turned out to be the case at all. But there's a kind of 'otherness' about autism that is a bit daunting.
Having been through a period when I was very concerned about my DS1 I was terrified, for my it was partly ignorance (pre MN days) I was convinced that if he had a communication disorder I would never get to know my own child, partly how autism etc are portrayed in the media, also pre-children I did know a family with a severely autistic child and his behaviour was extremely challenging and I just didn't know where DH and I would get the strength to deal with that sort of behaviour (once again not understanding that one autistic child was not necessarily the same as another).
I thought that autism was all about lack of communication and relationships.......To be honest I really had not thought about autism at all (despite being a teacher!) Iwas so sad that my ds would never have friends, a loving relationship and that I would not be around throughout his adult life to help him. I was also sooo sad for my dd, who I thought would never have the fun of having a brother. ignorance was definitely the key to my fear. DD has her own very special rel;ationship with ds and he adores her. Learnt to look at today and not tomorrow, so that helps hugely. Does this answer anything. SO tired must stop writing and go to bed.
We were not scared of an ASD dx, but that was 8 years ago and we were desperate to get some answers. 8 years isn't long but it really is in the SN/ASD world, I've seen such changes in that time. We never had a problem with an ASD dx if it is accurate, you can't change something just because you call it something else. Having seen a Paed privately who said ASD and looked it up on the internet we actively sought confirmation from our NHS Paed, mostly because it made sense and helped us understand what to do and what to expect. At that time we were not aware of a dx being the door to services but, of course, it is.
I was scared of it when I was beginning to think ds1 might have it. But that's because I didn't understand what it was about. Now he's so far behind is peers and so autistic I'm just happy to have something to explain the bizarre behaviours. Where autism can differ from other SN is that you don't get used to it from birth- you start with a supposedly normal child, and then you gave to get used to the idea that that hasn't happened. I think for me the thing I am most scared of now is that he won't live independently (he won't) and I worry immensley about that.
I dont know I was scared that dd was autistic in the begining but I think that was more the initial worrying that she had sn more than autism iykwim and hey ho look whats happened
I would agree with the comments made; on a wider level there is a lot of ignorance out there with the whole gamut of special needs in general not just autism (which also seems to carry with it its own brand of fear and loathing).
What I have found is that ignorance breeds fear and fear is a powerful thing.
People hate diversity, nature loves it. My son is not on the spectrum but I have met a few autistic children (and adults) and all to my mind deserve as much chance in life as anybody else.
i never had the fear of my son`s dx of asd but worried how other people perceived him once we told them and we have been very choosy who we tell but unfortunately its down to ignorance..on other peoples side that encourages the fears in me, ive waited until people have got to know my child and realised how wonderful and fun loving he is..he`s very sociable and were lucky but i`ve worked hard on him from an early age, then i casually drop it into the conversation when the time is right and say " you probably thought there was something about*** didnt you well this is because" and so far no-one thought he had asd but i`m sure i may come a cropper at one point and my son may suffer from it as they may not want to know but its a tread carefully scenario in who to trust with the knowledge whilst protecting your child from repercussions, but i want people to know that asd ISNT RAINMAN and that every child like a NT child has their own personalities to bring into it and that they are all different, but once they have the understanding people are not fearful anymore which is how autism should be dealt with not this dark secret kept away .
Autism only seems to get a mention in the media when it's a 'dramatic' story. We hear a lot about the savants even though they are a tiny minority. We also hear about the more violent aspects of ASD, especially if there is a murder involved. I would say that a lot of people associate autism with either:
- headbanging and rocking,
- Rainman, or
- The Curious Incident of the Dog in the Night-time.
It's also not that long ago that the "refridgerator mother" theory was widely believed. There aren't all that many types of SN which are blamed on the parents, with the exception perhaps of ADHD.
Autism is also unpredictable. Your child may be happy and sociable at 3 but completely withdrawn by the time they are 4. The opposite is also true. It's hard to plan too far ahead yet due to the very nature of autism you always have to be at least 5 steps ahead of yourself. It's confusing and for a lot of people that can be very scary indeed.
I don't think I was ever afraid of autism. Growing up I knew of four brothers of which one had severe asd. We just accepted him and never really thought he was "different" even though he could not speak and used to enjoy licking people.
I never looked at it from the parent's point of view and just assumed that any schooling or help he got was his God given right.
Nine years ago I met a friend whose son was going through dx(remember as Davros says its a long time in terms of asd). I was horrified that there was no such God given right to any help. My friend was on her knees in desperation dealing with LEA, paed etc and I said to her "I couldn't do it, the constant battling to access services etc".
Sods law of course, that I then had an asd child and yes I hate the statemneting, meetings etc more than anything else. They are my personal fear..
I also agrre that having a child that you think is ok and then you start to have doubts and then the road to dx is pretty crap too.
My personal fear is that ds will be left to fend for himself when we are not here and he will not be able to do it. He does come across as, I hate to say it "slow" and will be very vulnerable. However, I don't think he would be classed as severe enough for supported living.
In my worst case scenario he will end up like one of the people on "Life of Grime" type programs, living in a filthy flat in 2 square foot of space surrounded by empty cans and rubbish, with the council workman shaking his head and saying "How do people live like this".
Yes, the when we are not here doesn't bear thinking about
I also used to think I could cope with any disability but ASD- I now have a daughter diagnosed with HF ASD. I have written here before about my decision not to inform education of the diagnosis (they have been informed she has mild communication difficulties and will accomodate accordingly). The big reason for this is because of the publics perception of people with ASD. My daughter does not fit the picture that the public has of a person with ASD. People, if they comment at all (haven't had any yet) might see her as slightly quirky. Her personality outshines any difficulties she has with communication. She is making such incredible progress at the moment (not recovered!!!)that I am still confident that my decision is correct.
Will just add that I have had outstanding support from the NHS up here in Scotland. DD received weekly SALT as soon as a problems became apparent (before diagnosis)and has continued with this. Has also had an OT assessment and will attend handwriting classes before she starts school this year. Must be the luck of where you live.
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