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Given verbal Dx of ASD today In Shock

(22 Posts)
ihavenewsockson Fri 26-Nov-10 19:24:04

My DS1 is 3 and i've been worried about his speech delay for some time.
Had hearing test and he is on the list for SALT.
Saw pediatrician today who said he is on the mild end of autistic spectrum.

I am in shock. We were hoping to home eductate but the pediatirican basically said it would be impossible and I would need the professionals to help.

I really don't want to send him to school as there is quite a bit of religious persecution in our local area and I feel he will be stigmatised and labelled.

Has anyone had any success home edding their ASD child and is it normal to be in such a state of shock?

ArthurPewty Fri 26-Nov-10 19:25:46

Message withdrawn at poster's request.

ihavenewsockson Fri 26-Nov-10 19:31:38

Thanks Leonie. I feel very weepy and as if I've let him down on some level.

I kind of knew they were going to say this and I've deliberatly avoided the boards and doing any research as I didn't want any of my answers at the consultation to be weighted either way.

DH is in shock too and wishes we could turn back the clock and act as if we never saw the pead. Denial i suppose. He doesn't want DS to be labelled either.

Is it more likely in subsequent DC? I have DS2 who is 22mths and I'm scared to look for signs in him too.

I need to do a fair bit of research i think.
So weepy tho. Silly because it could be far worse- i mean , he's not terminally ill. sad

StarlightMcKenzie Fri 26-Nov-10 19:40:28

Message withdrawn

woolyxmastree Fri 26-Nov-10 19:41:40

Its a tough time , it taken me ages to accept DDs (5) dx of ASD...still have moments of sadness now. Also watching DS (15mnths)very closely. It took my DH longer to deal with it and accept it is not an 'illness' you can cure. You do go through a grieving process, denial is normal and anger...etc.

Research, mumsnet, NAS and support groups. But for now take some time for yourself...and wine. Then prepare for the written dx.

StarlightMcKenzie Fri 26-Nov-10 19:42:35

Message withdrawn

woolyxmastree Fri 26-Nov-10 19:42:51

well said star.

anotherbrickinthewall Fri 26-Nov-10 19:46:23

sorry about the DX, even if you expect it it comes as a shock. as others have said, don't be put off home edding by what the paed said. A fair few parents to kids on the spectrum end up home edding, there will be webgroups and books about this I am sure, its not that unusual a choice, particularly given the lack of support/knowledge in some mainstream schools.

ihavenewsockson Fri 26-Nov-10 19:58:21

Thank you all so much.
You've really helped me to clear my head a bit.
I'm on the NAS website at the moment and browsing a bit.

"There is nothing so scary as ignorance, or as unhelpful to your ds." So very true.

I will keep a log aswell. Lots to think about, I will be back later... smile

WhizzBangPhlebas Fri 26-Nov-10 19:59:28

just a quickie - I've been involved in home education community for 9 years - I've electively home educated my 10 year right the way through (no nursery etc). Loads of children with ASD are home educated very happily - lots of them because they haven't had a good time at school, though increasingly I meet families who are EHE from the start. I also have a 4yo ds with ASD & an 18mo dd, both will be home educated.

My son has apparently HFA but a very severe language delay/disorder (at 3yo he didn't even have the receptive ability of a 12mo) - for that reason we've run an ABA programme for the last year (he needed even more intensive input that I could give him at home on my own), he's made god progress & now goes to nursery for 9 hours a week to practice social skills.

We're already reducing the ABA hours & over the next year expect to move towards a more typical home-ed lifestyle, stopping nursery next Christmas.

HE-special www.he-special.org.uk/ can be quite useful - though it occasionally borders into the wooo! & conspiracy theory .. I prefer this board for legal/procedural advice ... it is nice to know there's a community of HE-ing parents out there (the early years list on yahoo used to be very good too though it's been years since I looked at it).

And the diagnosis is really fucking shit ... it absolutely devastated me.

Al1son Fri 26-Nov-10 20:06:56

Ihave you're right that you need to do some research. If you Google home education you'll find lots of sites and lots of information but I'm not sure that's what you need to do right now.

You might be better to spend a bit of time looking up ASD and perhaps spending some more time talking to other parents of children with ASD. I don't think that when you're right at the top of the emotional rollercoaster which you're on right now is the time for making decisions. You may need to step back a bit, gather your thoughts and get used to the idea for a while first. Being in shock is a good description and you'll probably go through a fair few other emotions about it too.

When you're ready to share the information with friends and family you may be surprised by the negative reactions you get. Some people find it very hard to believe, especially when children are at the less severe end of the spectrum.

Professionals can sometimes feel free to share ill-considered opinions and they can really throw you. Your gut feeling is a good guide at times like that so don't be afraid to listen to it.

Take care of yourself and don't feel like you have to take on the world straight away.

dietstartstmoz Fri 26-Nov-10 22:09:48

Ihave-sorry to hear you're having such a rough time. I think i'm going to be like you in a few months time.
I have had concerns about DS2 speech delay and have requested SALT assessment which we have on 3rd dec. On Monday this week DS2 nursery suggested we gets early years specialist involved-hinting at ASD, quite upset by this although there are some indicators, and on Weds night DH came home from DS1 parents eve and teacher suggests we get GP involved for assessment -hinting at ASD. So been a crap week here for us, can't quite take it all in and not sure if we will even get a def DX but can't quite believe that both my boys will be assessed.

SausageMonster Fri 26-Nov-10 22:34:05

ihave

You can only get the right sort of education for your son after you've educated yourself.

You need to immerse yourself in reaserching as much as you can about ASD so you can see the world from his point of view and by doing so you'll be able to develop strategies yourself that will help him.

You need to understand how special educational needs should be identified and supported in schools and demand that your son gets the educational he deserves and is legally entitled to. that sort of support does not automatically follow a dx - as you'll find.

There are plenty of people onhere who have children with ASD and who have successfully obtained very good support, so use their experiences - they are always willing to help.

You will be in shock, probbaly for sometime.

But let me end on a hopeful note.

I have a son also dx'd as being onthe 'mild' end of the autistic spectrum. He's now in his 3rd year of Uni and predicted to get a 2:1 Science degree.

And he didn't even receive his dx until aged 15 - so think how much better the outcome will be for your son who will receive 12 years more support than mine did.

Best wishes

mariagoretti Sat 27-Nov-10 20:40:38

ihave

An ASD label is a signpost to what you can do to help your DS. You already know him inside out, and now you can find out more about some of the ways he reacts to the world. Home educating works very well for lots of dc on the autistic spectrum, and at some point most parents do it or consider it. I would strongly suggest you apply for a statement of special educational needs anyway, as it gives you a fairly free choice of schools should you change your mind in the next 3 years.

Even if your ds would benefit from some specialist education on top of what you provide at home, there will be a way. For example, at his current age he could have a Portage worker come to your home regularly. A few sessions in a speech therapy unit in a different area could be funded. A few people have managed to get the council paying for home ABA tutors. He will probably get more speech therapy through education funding than you'll ever receive through the NHS.

Later on, you might flexi-school him so he goes 0.5-1 day a week for particular activities in a school that can meet his needs, or with a specialist teacher. He could need to go to a private school, or a school with special provision. A faith school might be essential for him for a coherent set of messages. He should get transport if his education involves travelling.

But without a statement, he has no legally enforcable right to anything other than whatever unsupported place the council offers in the nearest available nursery or school with a vacancy. Councils love home ed cos it saves them a fortune in special needs provision. And if religious persecution is a problem locally, I'm guessing differences and disabilities might not be well supported.

lisad123isgoingcrazy Sat 27-Nov-10 22:12:53

Just take time and read little bits and pieces. Just please remember they are all different and so what one child with ASD might have trouble with, your child might be fine with.

Give yourself and your husband time, it took me a few weeks and we knew it was coming!

I wouldnt take the Home education comment to heart, and clearly they are an idiots and you knew your ds best.

Can I ask what you meant by: I really don't want to send him to school as there is quite a bit of religious persecution in our local area and I feel he will be stigmatised and labelled

Do you mean from your religion? Thats terrible that you feel like that but know what you mean

ihavenewsockson Sun 28-Nov-10 19:26:30

Sorry just a quick pop in, we are looking into the 'earlybird' courses and trying to persuade Portage to come and visit us. he was 3 a couple of weeks ago so is just over the cut off point.

Lisa- no problem from our religion, the opposite, they are very supportive but we are in a rural area and the schools round here are known for not being accepting of our religion. A few families have had to take their children out of the local school due to bullying and the children experiencing prejeudice from the teachers.

At the moment, I'm just trying to learn all I can about ASD so I can help him and be aware ofhow he sees the world, I really hope the doctor doesn't presure us to send him into nursery. We attend 3 sure start groups per week and they are lovely, we also do alot of 'playdates' (hate that phrase!) so I'm hoping that will allay their socialisation worries.

The NAS website is really good and I found a lovely ASD forum the other evening.

Still in shock and I keep wondering how much of his personality is 'him' and how much is governed by the ASD, IYKWIM?

StarlightMcKenzie Sun 28-Nov-10 19:31:48

Message withdrawn

ihavenewsockson Sun 28-Nov-10 19:35:44

That's interesting Starlight- so he needs to be shown how to play and interact?
He is better in small groups and with people he knows, his eye contact is very good and he tries to understand what they are asking him but with strangers/ new people, he just blocks them out and they must think he's deaf.

Is it caused by genetics?

ihavenewsockson Sun 28-Nov-10 19:36:31

(Autism , not selective deafness- if that was genetic I'd think he got if from my brother smile )

StarlightMcKenzie Sun 28-Nov-10 19:40:11

Message withdrawn

deneasels Sun 28-Nov-10 19:56:34

Hi, We have been home educating our hfa son extremely successfully for 2.5 years.
We have a huge network on Home Ed Autism group and most professionals were anti, but have to say now how well it is working...If you want to do this, go for it! We have no regrets and all the mums we meet with dont either..
You know as a parent what is best.

Good luck,
Denice

ihavenewsockson Tue 30-Nov-10 20:43:22

Thank you for all of your encouragement.

I feel completely in over my head sad

Not sure what to do for the best, for him.

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