Aspergers/ASD support thread

blue_monkey_2

Lotty,

We do understand, everything seems to take forever, when my son was diagnosed last week they just told me and said he would be back for his assessment and then that was it. So what now? No-one tells you. What I would suggest is that you find a local support group. If you let us know where you are then someone might be able to help you. I go to one and it is my lifesaver, I really do not know where I would be without it. Yesterday I learnt lots, it was someone from OT talking about Sensory Issues and I came out feeling I knew my children 100 times better. Amazing. Without this group I would feel very lost and that is the truth.

So if you can let us know where you are we will see if we can point you in the right direction if we can. Or you could google ASD and your area, keep on looking and looking. Find a local childrens centre and ask them if there is anywhere - if they say they will check badger them for the information. There is even a lady at our support group who goes to school with the other mums to fight for their kids getting the right education. So please look for one to get some help (goes for the rest of you too if you do not go to one )

blue_monkey_2

covlass wrote: »

Have you tried contact a family? They should be able to advise you.
http://www.cafamily.org.uk/index.html
Getting a DS for ASD can take a while as once a child has a Ds for ASD it stays with them for life. Try not to get to stressed I know how hard it can be, I would take a look at the above link, they are really helpfull.
x

There are some mums at our support group who have had their Autism Diagnosis taken away so I do not think this is the case. It does take a long time but can depend on area to area. I was on a 2 1/2 year waiting list for my son's appointment in the last area - this was for CDAC who would dx him - the clinic I saw last week I was waiting 4 months to see Paeds and he goes back in 2-3 months for his Dx. So that is 7 months tops. It really does depend on what history you have to back you up I think.

Mandles

covlass wrote: »

Hi I remeber when my DD got her DS for Autism I didnt really know that much about it I found the national autistic society has a great wealth of information available.
Dont know if I am breaking the board rules 9sorry if I am)
www.asdfriendly.org this is a great site well worth joining they are all a lovely bunch

That is a great site , thanks. Even gives you how someone filled in their DLA form which would have been really handy. I have ticked something i shouldnt will they reject claim or just ignore it and discount that particular answer(i did write a note of why i ticked it next to it)?

covlass

blue_monkey wrote: »

There are some mums at our support group who have had their Autism Diagnosis taken away so I do not think this is the case. It does take a long time but can depend on area to area. I was on a 2 1/2 year waiting list for my son's appointment in the last area - this was for CDAC who would dx him - the clinic I saw last week I was waiting 4 months to see Paeds and he goes back in 2-3 months for his Dx. So that is 7 months tops. It really does depend on what history you have to back you up I think.

It took nearly 2 years to get my DD Ds as I was told they only give a ds when everything thing has been double check as once its given it stays with them for life. Must be down to different areas, may be. We see a consultant who gave the original Ds we see her once every 6 weeks. We have a very good childrens team that work together and with the school so we are lucky, but this area is poor on other things.

Strapped

covlass wrote: »

Hi I remeber when my DD got her DS for Autism I didnt really know that much about it I found the national autistic society has a great wealth of information available.
Dont know if I am breaking the board rules 9sorry if I am)
www.asdfriendly.org this is a great site well worth joining they are all a lovely bunch

Great resources on that site, thank you.

lottylouj

again thank you everyone, im feeling quite over whelmed by the help and support, i wish i had found this thread sooner. ive had a look at some of the webbies they look good but i dont want to look too much until i get the proper diagnoses, it would almost be like tempting fate.

i think i need to try to take a step back and try and ease down and remember what a beautiful dd she is.

softwaremad

Dont worry to much about DLA you can appeal! you have been under immense stress and they will have to understand that!

as there are days when your brain cant functin properly as there is so much to take in -- my dd was diagnosed 10 years ago and i had to fight to get it but as soon as i moved to a different area within 3 months we had the diagnosis

still i get befuddled as there is so much to take in - the other day we had a meeting at the school and my brain coul only handle an hour

each battle you win you learn a little more in prep for the next - chill out - take it in your stride - ask for help and you will get it from here! good bunch of people

only one child do i know of that has had the diagnosis taken away and that was because her mother had bullied them to diagnose the child with asd when really she was just taking her time (they were 3 at the time)

all the best

softwaremad

lottylouj wrote: »

again thank you everyone, im feeling quite over whelmed by the help and support, i wish i had found this thread sooner. ive had a look at some of the webbies they look good but i dont want to look too much until i get the proper diagnoses, it would almost be like tempting fate.

i think i need to try to take a step back and try and ease down and remember what a beautiful dd she is.

People often say what a shame wish there was a cure - how unfair it is; but to be completely honest if there was i dont think id take it! my dd is 13 now so a cure would leave her bereft in a world that doesnt make sense ! and i love her as she is - there is no way i would get as many laughs as i do from my dd with a normal child - her observations of the world are bang on!

she has her quirks which at times frustrate me to hell and back but on the whole the laughs we have shine through.

blue_monkey_2

You are so right softwaremad. I've just had a lady from our local childrens centre who has visited and I had told her that I have, for now, decided not to give DS medication because I do not want it to change who he is and the things he is good at. He did his 14 week gym badge in 3 weeks and it would be a shame for him to lose that ability to make (my/our?) life easier. While life is very difficult at times I do think that both of my children have wonderful qualities too and right at this moment, I do not want to change that.

A cure? Sometimes it would be nice to have to put up with some of the things they do, to have more of a 'normal' life, but at what price?

softwaremad

i refuse point blank to drug my dd - a) she doesnt ike tablets and will spit them out and b) who is it really for

in my oppinion its for the doctors rather than the children as they write their research papers etc.

initially i was told that melatonin was a herbal med! i went mad when i found out they lied and its a synthetic - no i have good days and bad days!

the hardest i think was when my dd started her periods#! although her hormonal strops are bad the worst was trying to get her the depo jab - one doctor accused me of being an unfit mother as it was disgraceful to do that to a child! what a cheek

my frustrations with my dd' s disability over the years i have learnt to redirect my anger to the muppets who havent got a clue that surround us in this world.

only the other day i had a doctor tell my that my daughters "disease" i mean please its a disability not a disease - and if it were i want it as i would love to throw a strop in a shop because there are too many people in it!

i think her outlook on life is right and its the rest of us that are wrong!