I can't explain T's HFA.

[Tylers-mum]

Hiya guys.

Hope all is well in your neck of the woods. <'> <'> <'>

 

OK, twice this week I have been in the situation whereby I've had to explain T's Autism. It's surprising the amount of people out there that have either never heard of Autism or that know very little about it.

 

Thursday, T went home with a friend from school so I had to explain it to his parents (their English isn't the best so that made is double hard!), then today he went to a classmate's birthday party, I left for an hour to do some quick shopping and returned for the last hour. I explained to the mother of the birthday girl but it all came out wrong on both occasions.

I have NO idea how to explain it in quick but simple terms.

 

PLEASE don't beat me but just so you know how bad I was, I explained that 'He behaves as a spoilt child would and that he's self centred but that's not b/c of him being spoilt, it's b/c he is both emotionally and socially developmently delayed'. I know, me VERY bad Mummy!

 

But how do I explain???

[Lucas]

There isn't anything wrong with saying an Autistic child is or may be socially and developmentally delayed: a lot are. It's when people say it's because they're Autistic that they're delayed in some way when it is far more complicated than that.

[Bullet]

I am hopeless at explaining Tom's ASD as well. I refuse to say he's delayed because that indicates that there are certain developmental paths that all must follow and that there is something wrong with the child if they are not following that path. Whereas I think that it's good to realise that there are different ways of developing. For example Tom seems far happier doing signs than words. He has hardly ever used words in the right context and as a means of communication. He can chatter away quite happily but it's all repeated from things he's heard earlier. He has never, for example, asked a question or called me "mummy". But today I was singing "Pat-a-cake" to him and when I paused he did a couple of actions including making me do the Makaton for "mummy" and he then touched my face with my hand doing the Makaton sign and looked at me. So it's certainly suggested that the Makaton signs mean more to him as a means of communication than verbal words.

I had a lovely woman talking about Tom the other day. He was drawing for over an hour at Toddler group, just sitting with one piece of paper and a few crayons and practising drawing shapes. The woman said how good he was and how remarkable because most children his age had such short attention spans and when I explained his ASD she nodded and said she taught an autistic child. It is good when people understand.

[Bagpuss]

TM

 

Your NOT a very bad mummy.....your just doing the best you can. Heck, I wish I had a ?1 for everytime i felt i could of handled a situation better or explained it better.....please don't beat yourself up

[Kathryn]

Tylers-mum,

 

I sympathise as I've been in this situation too! I was talking to my hairdresser about L and she said "I don't know anything about autism, what is it?" Well there I was with a totally captive audience (she was cutting my hair)and I was rendered totally speechless and couldn't think how to summarise autism in a way that would make her understand. I think I muddled through in the end, but wished I'd had a neat speech prepared for just such an occasion.

 

Oh well it makes a change from "Where are you going on your holidays?"

 

K x

[bid]

TM <'> my mind always goes completely blank in situations like that!

 

Bid <'>

[Tylers-mum]

Thanks everyone.

 

Just wish there was a simple sentence that totally summed him up ya know. Like why he has meltdowns, why he can't be teased etc etc.

 

*Sigh*

[KATHY BLAIR]

I used to have little printed out cards I had made myself that explained Aspergers and how it affected Rachael. Then I could just hand it to parents when she was going to a party for the first time or meeting new people. Then if they wanted to ask any questions they could do so. Most people now know about it, so I don't use them anymore and when I have to explain to anyone now I am more confident in doing so. I am surprised by the amount of people who now know about the condition when I mention it.

 

The cards just simply explained that what the condition was, that it affected her social skills, communication skills and flexibility - Rachael is always very compliant in social situations unless she is reallyfamiliar - but it explained that she can be aloof or that she would have difficulty with understanding instructions etc. By doing this you aren't suddenly remembering that you have forgotten something and hoping that it is going to be alright until you come back!

[lindy-lou]

hi T's mum,i find it hard to explain to people as well,its too complex to be summed up quickly,like how can i say.... India thinks her life depends on sitting on the right hand side and walking down the stairs in front of you,and then expect anyone to understand to what extent those maybe seemingly minor things to them go,but it is things like that that i tell them,that to another child they may get upset about it but to Indy it will spoil her (and my)whole day,it wont be forgotten,it cant be repaired by going and doing it "right" IYKWIM,im sure you do!!

 

Also i dont like explaining to people now,as when i told a few of the mums at Indys nursery they stopped talking to me and pull their child away from her like she is a dangerously contagious illness

[kirstie]

If anyone asks me what As is i just say it's a social and communication difficulty. They either go"Oh right, "and pretend that makes perfect sense to them now or they will ask me more about it. so thats when i get into the nitty gritty of it. Some peop,e are interested, and some are just afraid to ask i think. I hada great chat about it with my Midwife when i was in strong labour with Aiden (dontcha just love those epidurals!) she was really interested.

[justamom]

Thanks everyone.

 

Just wish there was a simple sentence that totally summed him up ya know. Like why he has meltdowns, why he can't be teased etc etc.

 

*Sigh*

 

Totally agree with you on this T's Mum I had the same problem today, we had friends over for a bb-q today, we have not seen them in ages and they did not know about Keegans dx. It was so hard to explain to them all about AS - even though i have researched/read up and know alot about it i cant seem to put it into a simple sentence that makes sense to others. I could ramble on but its waffle to others i need a quick sentence or two to make them understand??

 

what do others say to new people????

[lil_me]

I find the NAS 'What is Autism' leaflets come in handy for situations like this aswell, unfortunately if you haven't got a few days to answer all their questions it is hard but the leaflets also have contact info for NAS on them if they want to know more. I rang the NAS and they sent me loads.

[Stephanie]

Hi

 

I am useless too, my son has HFA and I always try sugar coating it or making a big deal of the positives.

 

Instead of saying your son has HFA and trying to explain what autism is and is all about (and you are right, people have heard of it, but don't know what it really means) - why don't you just say "he has some difficulties with speech, making friends etc etc or has special needs (if you like that term, I personally don't). just explain where his difficulties lie rather than actually mentioning autism, people sometimes fear what they don't understand and it all becomes negative.

 

At parties etc, I will say to the people holding the event "my son has a problem with processing information and might be slow to react, can you always tell him what's going to happen before you start - just so they say "we are going to play this game, then that game, then it's time for food".

 

They just need to know how to handle him rather than what his diagnosis is at the end of the day.

[LittleRae]

Hi

 

I agree with Stephanie. I don't go into too many details. If my son is going anywhere I usually mention things like

'keep an eye on him. He doesn't like being teased and could lose control'.

'he often forgets to go to the bathroom when he's involved or enjoying himself, so could you remind him every few hours'

'if he gets a little hyper, just remind him gently to calm down'

 

There are some situations where you wouldn't want to mention the diagnosis. Some of his friends parents know, others don't - depends on how I think they would take it.

 

A