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Do you tell a 5yr old he has high functioning ASD, and if so how?(22 Posts)
This has'n't been an issue to us before, but there have recently been a couple of incidents where other, older children have noticed something different about ds. I have found myself stummbling over my words and not really knowing what to say.
not sure how- although the NAS produce some helpful bpooks as does Jessica Kingsley. But yes imo its essential that you tell them. My friend's dd who is very hiigh functioning (now age 6) has been told and its helped herl. Unfortunately she's now picking out all the autistic children she comes across and asking them when they were diagnosed, when they knew they were autistic etc. Very embarrassing as somme of them a)are in assessment not dxed, or B) have been dxed but haven't been told. Lots of social stories. bineg used there.
Luke Jackson talks about telling your child in his book.
I read Luke Jackson's book too. He says knowing really helped make sense of everything.
DS 4 1/2 does not have a diagnosis but has a lot of problems which are associated with AS and ADHD. As he doesn't have a diagnosis we obviously are not going to tell him that he does but we do talk about his problems and he knows he has special needs.
Personally I think 5 is too young. My dd who is nearly 6 and has a language disorder (with autistic traits) really could not take that in I doubt.
I also have friends who have told there children and they always blame everything on their AS/asd. Sometimes it isn't to do without it at all but they will say things like "I can't help it I have AS (sometimes this is the case, but not always!)
Dd has asked me why she is different and I must admit I did find it hard but I explained it to her in 5 yr old terms.
Maybe just explain the he has a problem with communication then when he is a bit older 8+ then explain about asd/AS. Maybe phone your hv/camhs or whoever for advice with how they think your ds would cope with it. I just know my dd would not get it at all.
I told my DD about dyspraxia when she was 8 ( we had a diogonosis at 7). She had some sesions with a OT group and there were children like her there. We just said that she talk longer with things then other children and talked a bit about what dyspraxia is. I think 5 is probably a bit to young. She did go through a phase at 9 saying things like I can't because I have dyspraxia, but her teacher was very good and just encoraged her to try. She is now 13 and will have a go at anything.
I wouldn't tell either. I have a 4 (nearly 5 yo) DD diagnosed with HF ASD. There has however been a differing diagnosis that says specific language difficulty. I very much do not want my daughter to be thought of by others as "oh she's autistic" She just is who she is- a very sociable, funny, loving girl with no behaviour problems but an odd turn of phrase.
I have also not let her school know- I have allowed them to know that she has communicatioon difficulties and we have worked on strategies for that (she also gets weekly speech therapy)
I think a lot of older people (my family included)would now be diagnosed as HF ASD but have gone on to lead full, productive and happy lives without being stuck with a label.
I've started introducing the word 'autistic' to my 5 yr old ds. I've just explained it in very simple terms, like that he thinks a little bit differently to others sometimes, and if it wasn't for his autism he wouldn't be so great knowing all about cars, he seemed to be quite happy with that simple explanation. Obviously when he's older I'll go into more detail if he wants to know. I wanted autism to be a familiar word, I don't want it to be a sudden shock for him to hear this from someone else when he's a few years older.
I use a similar approach to macwoozy to explain to ds2 about ds1. He doesn't understand what it means (although he probabvly has a better idea than many pros ) but he knows the word knows that ds1 is autistic and that is why he sometimes has to be treated differently, or why certain things are hard for him. The NAS have a great book for young siblings- my brother rory or something, written by a young child about her brother.
My friend's dd understands autism in terms of sensory difficulties really, so its been used to explain why her ears hurt with loud noises, and why she finds parties etc impossible, and just that things are "different" for her (not worse, not bad, just different).
Just had a look on the NAS website- and this link here has lots of books useful for introducing the idea of autism and AS to young children and their siblings. Some are recommended for children as young as 4 so there should be something helpful there. In fact I may have to get a few more of them for ds2
Ds1 is 5 and tbh I don't think he would be able to understand at all. He's been to a couple of social events organised by the local support group and so has seen other autistic children. If another child is doing something that ds1 does I try to say something like "He puts his hands over his ears just like you do. That's because noises hurt his ears too" or "He likes spinning round and round, just like ds2 does." Hopefully he will start to see that he's not the only one who thinks/acts in the way that he does.
Ds2 has no chance of understanding at the moment but he is very friendly (in an autistic kind of way ) with a little boy of about the same age who is also autistic. Hopefully he will see from a very early age that other children (apart from his brother) are like him. After taking ds2 to an introductory session at his future pre-school I strongly suspect that there is another little boy there who is also on the spectrum - although I'm not sure if anyone else has noticed this yet.
If a child can understand it, however you explain it and it whatever basic terms, then it would be helpful rather than harmful. I knew twin boy/girl, the boy has ASD, but the "A" word was NEVER used around his twin sister, erm she noticed that he couldn't talk, had strange/difficult behaviour, was in a different class to her at school, had tutors coming in and out all the time. I mentioned the word once when I was talking to her dad, driving everyone home from swimming and I caught her eye in the rear view mirror, she looked terrified, like she knew that word and that is was "bad" and we don't say it...... huge damage being done to her I thought.
Newscot, I'm surprised that hf ASD people in your family can lead full and happy lives without any intervention, support or acknowledgement. My sister who has undiagnosed but clear AS is very unhappy and seems to be quite typical.
I have told other people if I think the situation is necessary eg if ds is acting strangely towards another person (usually a child). He tends to follow other children around and bug them so I often inform the parent(s). Also the other child may want to play fight and the situation could escalate if I left it alone. Older children can understand that something is wrong. I often just say "please don't do that as my son doesn't understand" As for ds himself I've not explicity talked to him about it but autism has been discussed with him there. At the moment he seems to be ignorant that he is different as he lacks the ability to be objective but I think that he may want some sort of explanation soon (he is 5, 6 next month BTW)
Davros, the 1 person in my family actually diagnosed with HF ASD leads a very full, sucessful and happy life. She is articulate, speaks another language, has close family ties, good friends, loves her work, etc, etc. This is what gives me hope with my daughter- my niece(the diagnosed one) seems to have almost 'grown out' of her earlier difficulties- to meet her you would not even consider she had had a diagnosis of ASD. This is why I have chosen not to mention autism to school (my nieces parents didn't either- a very definate decision on their behalf) I don't want my daughter stuck with a label for her school life. Of course it may all come back to haunt me if my daughter doesn't progress as her niece has but the signs are good so far.
So far we've talked openly about autism, and have not felt the need to mind what we say in front of ds, we have a diagnosis and the school have been as supportive of his needs as they could be without a statement. He has a teaching assistant who is ment to be 1-1 but who will back off if all is going well, the children in his class seem to just accept him as he is although we do get occasional sinking feelings when ds has done a strip in pe or some chairs have been thrown about, and half the bloody school can't wait to tell me or dh when we go to pick him up, some of the parents know so I suppose my main concern is that he hear it from someone else other than dh or I, but he seems pretty happy at the moment and I don't really want to rock his boat. Next term in yr1 is going to be his toughest transition yet and with all the preperation in the world I just have a gut feeling that telling him or not is going to make a big difference I just cannot fathom whether that is a good or a bad thing.
I have had a few incidents where it has gotten to the point where I have felt the need to let complete strangers know, and that seems somehow disloyal to ds, as he has no idea (i think).
I must say at the moment I am backing off from telling him, but only a few weeks ago I felt like it was the only thing to do. Will this roundabout never slow down?
Jazzy, those could have been my own words! J is six and a half and I've been debating for some time about what to tell him - so far I've explained as far as 'your brain works differently' but I think he's at a point where he needs to have a name to it, for lots of reasons. Like you, I'm concerned that he may hear the word 'autism' coming from a third party and that would be unfair to him for someone else to know before he does, especially as I've told him that we don't know for sure what makes his brain different. Some parents I just don't trust with this knowledge but I can see a time coming soon when I'll have to give an explanation for J's worsening behaviour, and I think he should know first.
Also, I want to be able to use books and charities to help develop his skills and understanding, and so far everything I've come across has Autism or Asperger's emblazoned all over it. I don't think I can let him read a book about it without having to explain that he has it, iykwim. It's a difficult issue but I feel we're ready to talk about it in depth now.
Interesting Newscot and, I can see from your pov, encouraging. I think the problem is often people who are not diagnosed, it certainly is the case with my sister. If she would just get a dx and start to accept and understand herself and her differences, no matter what other people think, I think she would be a lot happier. In theory her life is fulfilled, she has a home, a job and even a DD but she is always in some sort of (often imaginary) trouble and is very, very unhappy. I know a few adults with AS who are more than accepting of their dx, two are actively involved in the "neurodiversity" movement and the other two I can think of give talks and seem to have found it very helpful to accept and understand themselves. This, of course, is a very different issue to whether to tell a young child they have ASD/AS or not....... hmmmmmm. I have to say that, even the most "hf" child I've known from very young has become noticeably different to the extent that it woudln't be possible or kind not to tell them something, its just how and at what age. I don't have that problem, DS will never be aware or understand it, so one thing I don't have to worry about, I do wonder what to tell his sister though...
Sorry, not much help!
Davros, don't wish to sound rude but is your sisters unhappiness maybe not part of her ASD but rather something else such as depression? Or do you think the depression is caused by ASD?
My niece does not view herself as ASD at all. One day when I have time (huh- thats a joke)I'd like to start a thread about when to give a diagnosis of HF ASD or if you wait and see if a persons quirks are just a part of their makeup and personality. I believe that for some people in the past, the fact that they were not 'picked up' and diagnosed has probably meant they have been able to lead good and full lives because they were just able to get on with life. I realise of course that this does not apply to many people
We have agonised over this - we have finally decided to go for written diagnosis (son 3 and a half has Aspergers) as it seems that he will get virtually no help without it when he starts school.
I went to a prospective primary school recently and had a chat with the senco. She was really nice, and was keen to tell me how they have experience with ASD kids. She gave an example of one child, who was getting into trouble in the playground. Another child ran into her and said 'Miss, that autistic boy needs your help!'. I know it was well-intentioned, but it sent a shiver down my spine. I don't want ds to be 'that autistic boy' - made me think that although we'll share the dx with the staff, I might ask them not to share it with the other children at first, and see how it goes.
We haven't told DS1 yet because atm he is not experiencing any serious difficulties at school etc. He doesn't have many friends but I genuinely don't believe that he regards this as a problem at the moment, although this may of course change.
If/when we do tell him, I am going to use the Luke Jackson book - DS1 is a good reader and I think that he could already read it himself if need be.
Newscot, not rude at all! I think my sister has depression but it is all tied up with the AS too. Not fitting in, not getting things right, not realising a lot of the time and often not caring..... but sometimes she does care and just doesn't know what she is doing wrong and what to do about it.... next minute she doesn't care and is bumbling along in her usual way, offending people a lot!
I told my 5 yr old about his aspergers dx. I think it helps him understand a bit, but he does use it as an excuse too' I cant stop hitting him, I have an illness'.
Wish I never told him.
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