Help with Daughter awaiting diagnosis of autism

khague

Hiya, i don;t really know where to start with this but my daughter who will be 3 in april is currently under refferal for speech delay and they are looking into her having autism, i know this takes a long time to diagnose but i don't really know what to do in the meantime.

It really upsets me when i start to think that she may never talk and may have a really hard time in life, i don't know what to expect and the professional won't say anything because they aren't sure yet?

Any help or advise would be much appreciated especially as my husband is not willing to face that she may have this?

thanks

lostbrain

You poor thing, it must be really tough. Not sure that this is the best forum - have you tried mumsnet? they have a really good special needs board and there will be lots of mums on there with children with autism

I am a special needs teacher working in a mainstream school and have some knowledge and experience of teenagers with a type of autism call aspergers syndrome - often people refer to it as high-functioning autism.

Essentially autism is a spectrum, and we are all on that spectrum to some degree I suppose, it is difficult for any expert to tell you what the future holds for your daughter because no two people with autism are the same. What unifies people with autism is a difficulty understanding the social world that nt people seem to be hard-wired to understand, the world is often very confusing and this can lead to high levels on anxiety as they struggle to decode the world around them. But it isn't at all all doom and gloom - I work with teenagers with a range of different special needs and working with children with ASD is the most enjoyable, most fun, I find it so interesting, trying to see the world from their perspective. Often they will be exceptional at something, I worked with one boy with such a gift for language and words. In my training it was drummed into me that it was school that was the problem for autistic children, not that the children were difficult and it is so true. Good luck to you. Do try mumsnet, I'm sure you will find better advice than I can give.

virgoean

Hi there
Just to give you a little light! my daughter is almost 13. When she was 4 she still wasnt clean, even for no.2's. She would only wear wellies, usually odd ones and was diagnosed with autism. Every child will be different! It doesnt mean she will have a 'bad' life. In many ways I think my daughter will have a much more fullfilled life because of the autism. She does live in her own world and hates change but in that world she is so organised and productive. I would like her to be able to perform better academically, but it isnt everything. Difficult to explain but she doesnt hold the stresses many children do. The main advice I could give you is that you understand her, she needs you to bat her corner, their reasoning doesnt fit everyday logic so they get judged and need people around them who dont judge thats you and your husband. I dont try to make sense of autism, I just make sure my daughter knows she is loved. My ex husband eventually left when my daughter was 7. Him not coping with her autism was a major factor. Shout at a naughty autistic child and it doesnt work! he never could work it out. Please keep trying to help your husband understand. With or without a diagnosis or 'label' your daughter is who she is......enjoy every moment x

starnight_2

I've also found great support from the people on the ASD thread here, link below.

https://forums.moneysavingexpert.com/discussion/604164

madjay

My son was diagnosed with autism when he was 3, was not clean until 4 could just speak at 5, It is not the end of the world, there is help out there. My son is hard work some times but we try to have a normal life, he is 9 now I know he may not do all thing that all sons do in their life but he brings, a little light into my world and I wouldn't change for the world

Allegra

khague wrote: »

Hiya, i don;t really know where to start with this but my daughter who will be 3 in april is currently under refferal for speech delay and they are looking into her having autism, i know this takes a long time to diagnose but i don't really know what to do in the meantime.

You have started well enough by asking the question here The unfamiliar is always the scariest - the more you know, the easier it is to accept and cope

It really upsets me when i start to think that she may never talk and may have a really hard time in life, i don't know what to expect and the professional won't say anything because they aren't sure yet?

There is absolutely no need to believe that she will never talk. And yes, she might have a hard time in life, but who doesn't ? Chin up - it might feel like the end of the world, I know - but one world ending usually means the start of a different one. It might not be life as we know it, but that does not mean that it is not just as beautiful in its own way

Any help or advise would be much appreciated especially as my husband is not willing to face that she may have this?

thanks

You both need to educate yourself as much as you possibly can - if he believes that a diagnosis of autism means she will spend the rest of her life banging her head against the wall silently in some corner somewhere, no wonder he can not accept the possibility. The key is to be aware that a diagnosis will not change who she is - all it will do is help you understand and support her in the best way possible for her, and hopefully, give you access to more specialist help from other sources.

BTW, my daughter has an autistic spectrum disorder (Asperger's), and I wish she had been diagnosed as early as your daughter - we'd not be facing half the problems we are facing now that she is in her teens if that was the case. The earlier the better, as far as I'm concerned.

churchrat

Hi

my dd is an aspie and also works with children with autism. She loves the job and the children repsond really well to her, She says that she can understand thier point of view. She also was not diagnosed when she was younger, and like allegra, I really wish she had been.

I can only say what the others have said-- read everything you can find, but please try not to imagine that your little girl has everything on the list, I dont know about you but I always imagine the worst!!!

Do you have any local groups in your area?
A charity working with autistic children in my area will let you take children to the toddler group without a formal diagnosis if you have already been referred. This is because of the (sometimes)long gap between referral and diagnosis.

Please dont be afraid of the future for you daughter. She will have good times and bad times, just like everyone else. Part of the problem for us was coming to terms with the fact that what WE had thought would be the future for our daughter (bf, house, bills, children etc) is probably not the future that she is going to have. But, as she told us, thats our problem, not hers! She is building the life that she is comfortable having, and she is happy.

Nobody knows what is around the corner, good luck with it all and keep in touch.

kiteslady

Hi I am yet another teacher, with a slightly autistic stepson. The one thing all our slightly 'different' children thrive on is continuity and routine, change throws them off course even when they are three. Kepp trying to make her days as calm and relaxed as possible and it will get better. find what works for her and let her do it, again and again if necessary.

your husband is probably angry because men always blame themselves for having a 'different' child. it is not his fault, nor is it yours. you have to convince him of this, preferably over a pint... Otherwise, enrole a good friend to help you out.

good luck. x

System

theres a really good asd/aspergers forum, if you just google it [cant do links]

penguin83

My son was diagnosed at 2yrs 9mths with low functioning autism. He didn't speak for a long time but you can now have a short conversation with him. He is still in nappies at nearly 6 but we are hopeful that we will get there one day. He started a special school when he was 4 and the progress he has made is amazing.

I think this is lovely to describe how you may be feeling and there is a fab website/forum here which has loads of info and support xxxxx

meritaten

just hope this cheers you up a bit - my nephew was diagnosed with severe autism when he was three and he couldnt speak either. just screamed or cried. his schooling was awful and his mum then got him into a special school (this wasnt a 'given' she had to fight tooth and nail for everything) and you would not believe the change in him! he is 8 now and his present school have worked wonders with him - his speach has improved to the point now where he actually makes jokes (to him) and takes the mickey out of people! he no longer avoids eye contact if he knows you, he will allow himself to be hugged (previously he would stiffen up and scream) and he is much happier! he is still severely autistic, always will be........but, the whole family can see his quality of life improving all the time!
just, be prepared to fight for what your daughter needs - it will NOT be handed to you on a plate and YOU will probably have to research the help available and ask (or demand) it!
my very best wishes hun to you and your family.
merit