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ASD diagnosis today

(16 Posts)
BeauticianNotMagician Wed 02-Sep-09 17:58:08

Hi after a few years of assessment today i was told my son has ASD.Is asd a condition in itself then im confused.I kind of zoned out today.I asked the doctor if my ds1 will continue to be assessed and she said he has asd but i then also heard her say autism.

I know it sounds awful but i couldnt really take it in she seemed to be very vague to me.I was handed a booklet INformation For Parents Autistic Spectrum Disorders and given a few websites to look at and that was that.

What happens now.I have a million questions whizzing around my head.

whatreally Wed 02-Sep-09 18:26:36

It doesn't sound awful that you didn't take it in. It sounds totally understandable. There are loads of lovely mums on the special needs boards who have been where you are now. I wish I could answer your questions but we have only just started going down a dx road ourselves & I'm probably more confused than you. The Special Needs - Children's board is often a bit busier so maybe try there for some words of comfort. Sorry, this is a totally inadequate answer but I couldn't sign off without responding. It must be a total shock for you even if you saw it coming so take it easy on yourself.

MaggieVirgo Wed 02-Sep-09 18:31:37

The first while after dx is awful. I remember going out for dinner that evening and feeling totally disconnected from everything that was going on around me.

I just wanted the problem to go away and I didn't have the energy for all the form-filling and print-out reading....

What age is your son? Did you see this diagnosis coming? My son was having ADOS and DISCO adn I thought naively that that was to rule out autism.

goblincandoa5k Wed 02-Sep-09 18:39:35

Hi,

ASD is a very broad category that covers Autism and Aspergers and something else i can't quite remember. Every child within this spectrum will be different, but will have certain behaviours/difficulties that fit a 'profile'.

The NAS is a really good resource "www.nas.org.uk/ here" They have lots of really good information.

How old is your son? Is he at school? If he is, you could try the SENCO - or they might be able to put you in touch with an Outreach service.

Take it one day at a time and remember that your son is still the same lovely boy that he was before he got the assessment. Labels are just labels, it does not define who he is.

Best wishes

MaryBS Wed 02-Sep-09 18:44:04

Just want to say I am here for you too. My son was dx'd 2 years ago this month with Asperger Syndrome (an ASD). I myself was diagnosed a year ago this month, also with Asperger Syndrome.

If you want to ask questions and I can help, go ahead. Its a bit of a shocker when you first get told, but it should open some doors for your son to get help, particularly at school.

Where abouts in the country are you?

MaggieVirgo Wed 02-Sep-09 18:53:28

PDD or PGD ?

something that means 'delays' and everso slightly borderline on the spectrum!

It can feel quite depressing at first. But once you get sucked in to a 'community' you'll feel better again dykwim? my son now having ABA and the people at his school/unit all very positive and good humoured and knowledgeable and supportive. They tailor a programme to each boy's needs. They monitor their progress, and there is huge progress..

BeauticianNotMagician Wed 02-Sep-09 18:53:39

Thank you for all your kind words.My ds is 4.8.I did have a feeling that he had autism and i have written on here before as i was fed up with nothing being done.It has taken so long to diagnose that i kind of talked myself out of it thinking that maybe i was over reacting.

He starts school in september.Im in Bedfordshire.Today they sais they would be in touch with the Social Communication Difficulties /Speech and Language Team ready for him to start school.I was given a leaflet about that as well.

One question i wanted to ask is about a statement i have heard this before though i dont fully understand what it entails.Is it something i need to think about now or is it too soon?

MaggieVirgo Wed 02-Sep-09 18:58:00

I absolutely agree about the labels. Take control of the label your son has been given, and USE it when you need to exploit some resource! and ignore it the rest of the time.

I often read something online and think,hey, I have that phone phobia too!

So I think it's possible for a person to have many of the traits, eg, difficulty transitioning, need for a routine, mini obsessions with seemingly bizarre household objects (that's my boy!) but if they are only to a lesser degree, coping strategies can be learnt. These behaviours don't have to totally interfere with a normal life. It doesn't have to mean that your son will be excluded from the rest of the World....

MaryBS Wed 02-Sep-09 19:01:53

The statement is something the school does, at least that is what it is doing for my son. It takes a while to get one - I've been advised about a year. If he gets a statement then he'll be entitled to more help. To be honest, the school have done such good work with him, this past year, he may have improved too much to get a statement!

MaggieVirgo Wed 02-Sep-09 20:14:06

Yes MaryBS, my son the same.. he's a changed boy now after the ABA. Still has his little quirks! I'm much more positive now than when we first got the dx, the weight of 'autism' seemed very rigid and heavy on my shoulders (and my son's) when we got the dx. Now I see that dx as something much more fluid, or elastic..... He's himself above all else.

BeauticianNotMagician Wed 02-Sep-09 20:22:25

MaryBS and MaggieVirgo how old are your ds's.I knew something was a little different with ds1 from a very young age.He had such little speech at 3 but in the last year it has really improved.The only area i have never seen much improvement is in his understanding.Did you take a long time to choose a good school for your ds.I worry that the school he will be going to is not good enough.However,there arent many good schools in our area.

MaggieVirgo Wed 02-Sep-09 22:58:40

My son is nearly 4 now. At 3 he had about 6 words and four of them were types of vehicles!! That was the time of his diagnosis.

If you don't have faith in the schools, can you get ABA afterschool in the form of home tuition?

I didn't realise my son was different at all. His total lack of speech was picked up on at 18 month check. He didn't meet any of his milestones. HOw did I miss that? I made excuses for him. I thought he was 'a typical boy', he was strong-willed, he would develop in his own time, he wasn't very obliging. Sounds like denial now. THe number one thing I noticed about him was that he wasn't a happy little boy. He seemed to be permananetly on the brink of a huge tantrum or getting upset over nothing.

In the last year his speech has come on brilliantly. It's still behind, at nearly four he still says "me hungry now' but wow this is progress. Last year he would just point to the bread bin!

I didn't get to choose a school. He's going to do two years at an autism pre-school and start mainstream school a year later than normal, but I'm in Ireland so not best person to talk to about 'the system'! but just giving you a pat on the back really. The days and weeks after dx can be a bit bleak. I wondered, when I wallowed, if my son would be eating sandwiches in some crappy bedsit on his own on christmas day after I died.

I know you must have so much to take in right now, but although I could hardly tell you what ABA is, I'm so very impressed with the progress the 'team' have made with my son. Bunch of blonde psychology grads, all very trendy, don't look like they have more on their mind than boys and clothes tbh, but they know what they're doing!

Mx

MaggieVirgo Wed 02-Sep-09 22:59:12

ps, that was not meant to offend psychology graduates, just these ones are all very, very young.

MaryBS Thu 03-Sep-09 07:28:35

DS is now nearly 8. Pre-school picked up on his behaviour, but he slipped through the net, his referral never happened. In a way that was a blessing (long story). We didn't pick the school for DS, but we are fortunate in that they have proved to be good in the area of SN.

I have to admit I am EXTREMELY wary of ABA, because of what I've heard - it sounds very much like they try to fit a square peg in a round hole, by trimming the edges! I am extremely concerned at how stressful it would be for a child. Its good that it is working for your son Maggie. I've tried to "conform" all my life, and its not always been easy.

BeauticianNotMagician Thu 03-Sep-09 13:47:28

I think i will just see how ds gets on at his new school for now then.We went up to his new school today as i needed to buy some more uniform and he was none to pleased.I think he will really struggle with the change.

MaggieVirgo Thu 03-Sep-09 20:24:14

Yeah I've heard that a lot of people are wary of ABA for the reasons you say. My son was at one point attending both a playschool and going for ABA. He had a different school bag for each place, and on the mornings he was going to playschool he would say "no, udder skooool". So it can't have been that Draconian!

I know what you mean about conforming though, and my son will still won't do anything purely because all the other children are doing it! But on his own, one to one with a tutor, he enjoys being challenged.

But I think with a child who was more severely autistic it could be very hard trying to force them to engage.

There are other things too though. NOT at all sure what TEACH is but it's apparently more popular in America.

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