What advice would you give parents who have just been told their child has autism?

[QueenEagle]

Today ds3 saw the paed. Lengthy appointment during which she observed him whilst gleaning history from us as well as reading all reports from Speech Therapists, playgroup, Early Years Team.

We were told he "almost certainly is autistic". He will have follow ups obviously and more tests done (including bloods for chromosomal abnormalities etc). They propse to treat him as if he IS so whatever help he needs is put in place.

I am a bit overwhelmed and a little emotional depite having suspicions for a long time. We have been given tons of leaflets and books but tbh everything seems a bit of a blur right now.

Sorry I can't help but didn't want to read your post without acknowledging it and sending you support

You are in totally the right place, there are an amazing bunch of parents here who will be right along with their experience, compassion and advice

take deep breaths and remember one minute at a time

{{{{hugs}}}}

Message withdrawn

My advice would be that he is the same little boy he was yesterday. dont let what is actually nothing more than a word on a page get to you.

try and look at this as the positiveit is, he will now be getting the help he needs tailor made for him and his difficulties.

Do read the info that has been given to you....just not yet. giev yourself a few days to let the info your Pead has given to you settle in first.

(((hugs))) as you sound like you need them and to re itterate what Twigg said about this being absolutly the greatest place to be. I have never known anyone so knowledgable (and that includes some of the DR's) about autism than JimJams et al

QE, you will/are undergo different feelings now you have been told about your Ds having ASD.

Where abouts on the spectrum is he?, i would agree with tobysmumkent about getting an official dx of ASD, it means a passport to more help for your ds.

When both mine were dx,d even though we knew beforehand it still floored us, its one thing to think it and then be told by a professional and then to get it in writing.

But he is still your little boy and your love for him wont change despite a dx of ASD and thats the one thing i kept telling myself he,s still M, she,s still R , i still love them no matter what, its like you find the extra bit of love to include fact that they are ASD.

please post some more and talk to us about how you are/feel.

love
jen
xx

QueenEagle, my DS1 has a dx of high-functioning autism and my DS3 has a preliminary dx of "social communication difficulties" but I'm fairly sure I know where that's going.

My advice is to try and take it one day at a time, stop comparing him with nt children, celebrate his own achievements, don't be down-hearted, and keep an open mind. No two children on the spectrum are the same, and it is very very hard to predict how a child with ASD will turn out.

Best to you, keep posting,

I'd say exactly the same as Mamazon, that he's still exactly the same little boy that you love and a diagnosis won't change that. As other people have said, the autistic spectrum is so wide that the label "autistic" is almost meaningless. It's not the end of the world. A lot can be done to help him. And you're probably at your lowest point - ever - right now and things will start feeling a lot more positive soon.

My little boy was diagnosed 6 months ago and I remember walking around like a zombie for about a week. Then I started reading about therapies, put an ABA programme in place and I can honestly say that we're back to normal as a family now. For me, the most important thing was to take charge and get DS the help that I think he needs, not what some paed thinks is right for him when she's only met him for 2 hours.

Make contact with your local branch of the NAS and let them put you in touch with other parents of autistic children. Meet some of them, preferably high-functioning ones. It will make you less fearful of the future.

Hi Queeneagle-I think I remember "talking" with you before when you were concerned about your DSs behaviour, and I mentioned that he sounded a lot like my DS5 who has a dx of Aspergers. Have they mentioned Aspergers to you or at what point they feel he is on the spectrum?
I have just had a diagnosis for another of my DSs who is 17 and also has AS. It is not so much of a shock second time around (and we were pretty certain anyway) but the first time is always a big shock. When autism was first mentioned to us as a possibility in respect of DS5 it was completely unexpected so I know how you feel.
As others have said, just take one day at a time. Read as much as you can and do join a local support group if you have one-the experience of other parents is a great source of comfort. Realising you are not alone and hearing how others cope with the kind of problems you are having is a real help.

hi QE, you are still going to be reeling a bit. I would say just take time yourself getting used to the dx, and then read through the leaflets.

Is ds3 the one who has selctive mutism as well?

Thanks for all replies.

I have no idea where on the spectrum he is - the phrase social and communicative difficulties has been used more and more just recently. Yes, misdee he is the one with selective mutism but the paed reckons that is all part of asd now.

Amongst other things ds3 will say "I see police car" rather than "mummy look at that police car" and he has never pointed to share something except at the tin to demand a biscuit perhaps. Also he covers his eyes and ears to shut out noise and people trying to comminicate with him. He has always walked on tiptoes. He is very aggressive and has major tantrum lasting ages in response to seemingly trivial things. He refuses to dress, to toilet and to cooperate with many day to day things unless he wants to. He has always lined things up and grouped things into colours.

We have been given a ton of leaflets - tbh I don't know quite where to start but I guess I need a few days for it to sink in then I can start phoning some of the helplines and groups.

btw it was his 4th birthday ysterday - what a day! The nurse said to us we are still taking home the same little boy and to have fun with him as much as possible - something some of you have aslo said here. This sounds to me to be the one piece of advice I am clinging to right now.

What is portage btw?

I think giving yourself some time to let it all sink in is good advice. Even when a dx is expected it is still a shock when you get it.

Portage is a service where a support worker visits you at home to give you advice and ideas about what things you can try next. They will often bring toys or games to help with specific difficulties. Ours also liases with the other people who work with ds2 so that we don't have to do much ringing around and arranging meetings etc. I think portage workers are usually specialist pre-school teachers too. Ours visits usually once a fortnight or more/less if we need more/less help.

Your ds3 is about the same age as my ds2 (4 next month) who has a dx of ASD. Atm the school he will be going to in September are just starting to get involved in his transition to Reception. Ds2 is still refusing to have anything to do with using a toilet or potty so that's another area we're working on.

Happy birthday to ds3 for yesterday.

Ah thanks for that.

How do people work with kids with asd when they refuse to cooperate or acknowledge that person?

Also do I still discipline in the same way as my other kids? I don't want ds3 to think that he will get away with murder but obviously I still need to make allowances for him. That is a very difficult one. How do other people cope with this aspect - how do you differentiate between waht is naughty behaviour appropriate for his age and what is attributable to asd?

I didn't realise til yesterday how "classic" some of ds3's peculiarities actually are. I guess I am lucky in a way though because he usually gets along at playgroup ok and will tolerate some other adults speaking to him (sometimes!).

It's a big shock when it first happens and you do need to have time to get used to it. My Ds2 doesn't have a diagnosis of ASD but a lot of similar problems and although I knew something was wrong I still remember being very shocked when it was confirmed.

I would really recommend portage if you can get it. A good portage worker will help you negotiate the rest of the system and help to see your Ds gets referred for useful services, support etc. Even if you don't feel upto doing anything else at this stage, if you can get that set up then your portage worker may be able to take some of the burden off you. There is a website and I think you can self-refer or ask your consultant to refer you.

In terms of discipline, as you start to find out more about ASD you will find it easier to distinguish what behaviours your son can't help and understand the cause of them. Many ASD children have extreme sensitivity to noise or touch and it can make them very upset at a seemingly small thing. Many also do not have good understanding of language so cannot understand an explanation of why not to do something. When giving instructions rather than say "Don't throw spoon on the floor", say "Keep spoon on table" because it may be that your son doesn't yet understand "don't" and is just hearing spoon floor. I would tend to err on the side that he is not being deliberately naughty - that doesn't mean that you shouldn't stop him behavingly inappropriately (if you can), but bear in mind that he probably hasn't done it deliberately and may not understand the meaning of a punishment anyway.

Thanks saker. Yes ds3 is quite sensitive to touch - he will brush away an area where you have touched or kissed him and frequently covers his eyes and ears to shut out unwanted noise (although much of the time we don't think things are actually loud iyswim). He seems to pick out things that he finds disturbing.

Hisunderstanding is actually spot on although we have discovered more and more that we have to be very literal when asking him things ie "would you like to put your shoes on, it's time to go?" will provoke a "Yes" answer but no action. Whereas "Put your shoes on, it's time to go" gets an immedaite compliance. The paed asking and explaining about this type of thing really made a lot of sense and a lot of things about his behaviour and responses just clicked into place when she explained things.

I have so many questions - I keep thinking of more and more all the time so I am sure I will be back again!

QE-regarding discipline, it is an on-going problem for most of us I suspect, especially when there are siblings as well. You will probably find that you cannot discipline him in the same way as your other children and this inevitably leads to them asking "why does he get away with it when I dont!"
I'm afraid you sometimes have to explain to them why you treat your DS differently and you will be surprised at how inderstanding they can be! That said, children with an ASD can of course be naughty just like any other and some will learn to try it on if they think they can get away with it!

My main advice would be to geta palce on the NAS Help course, which is specifically for parents with a recently diagnosed child on the spectrum. We couldn't attend (Dh's shifts) but it is supposedly excellent; also they do a siblings one I believe when they (the siblings) are over 8 and I can't wait for ds2 (about to turn 6) to be old enough to attend.

The other advice I would give is that your DS is still the same person, but you're not, your expectations / hopes etc (your very world I found) has been dramatically shattered. We knew Sam was HFA before he got his dx (about 3 years before) yet when it happened I ended up with PTSD. So go easy on yurself, its a grieving process and it can hit you like a brick when you least expect it. prepare for that.

X

best bit of advice, be kind to yourself, theres gonna be lots of feelings, anger denial blame uncertainty, and whilst those things alone are enough to deal with you will still be expected to carry on the day to day stuff, try & find another mum who has a child on the spectrum, i have always found other mums to be the best source of support, what about family support, that is another difficult one as grandparents often take denial to a whole new level.
as for the disipline issue.... all three of my kids have autism so we just settle for doing everything in an autism kinda way, keep asking questions there are lots of lovely mums on here who will help out if possible.

QE - With my 2 boys I find it's often the pitch of the sound that causes more problems than actual volume. Both boys find deep voices far more tolerable than higher pitched female voices, for example.

The NAS courses are apparently very good. It can also be a good way to meet local parents who have children with ASD.

IME it can be overwhelming when you stop and think about all the difficulties your child has. If possible I would advise picking 2 or 3 things to work on to start with.

When things have calmed down a little consider appying for DLA. It's not means-tested and can really make a difference. If you get tax credits these will also be increased.

Hi
Receiving the diagnosis is a bit like being hit with a sledge hammer and it took a long time to come to terms with it. My chap has HFA plus dyspraxia and some other stuff - if you read the reports it sounds like he can't do anything but he got reasonable SATs results in year 6, is very good on emotions and is kind and considerate. He used to have HUGE tantrums which went on for hours but these got better as his speech and language improved. We also went for cranial oseopathy which helped. I've just bought him a book for Christmas called 'All Cats Have Asperger's Syndrome' Its written for parents but its got cute pictures of cats (he likes them) which exemplfy some of the behaviours - it nearly made me cry in the shop and is lovely. One mistake I made was reading some books, which were frankley out of date from the library and scaring myself silly. Lots has changed in knowledge and diagnosis. Our Paed said that they call Autism a 'landscape' because the spectrum is full of hills and valleys and if you think about it, everyone has their own landscape of personality and one thing you learn once you've got an autistic child is that no two are the same - mine for example has never lined anything up in his life. As for discipline, rightly or wrongly I bumbled my way through (he was the first) and have always been rather strict. I do find that sometimes I seem to have to really 'lose' it with him to get a point across so that he sees that I really am cross about something. Mind you he's now started saying 'Now Mummy, I know you are tired but there's no need to shout' which makes me feel about 5! I got a bit caught up in the diagnosis, etc, and if there is one thing I regret is that I allowed that and the worry to take over and didn't enjoy my rather lovely little boy as much as I could have done. Also I find there is a tendency to think that EVERYTHING they do is not 'normal' but on having a second kid discover that that is not the case. Good luck.

the landscape idea is good. When people say Sam isn't like other autistic children they 'know', I use the analogy of autism as a purple camera filter- it doesn't change anything in the view (personality), it just gives it all a particular hue. So there isn't an autistic personality, esp. at HFA levels (or even at the most extremes of course). Anaology prob doesn't make sense writted down- sorry!

I did the NAS "Help" course about 8 months after I had DX for DS2 who was 5 at the time, I found it really helpful from both an emotional and practical point.
Must say it did (and I did) get a bit weepy at times, but it was very supportive and we spent most of the time talking about the positive things and all of the help that you can get.
I will also hopefully do the siblings help group.
I must say I was a bit of an emotional wreck when we got the DX as it came out of the blue for me and we then had a very difficult time at school. It took me about a year to really come to terms with things and put all the help in place.
I wish I had known about MN then.... I think you will get lots of great advice and support here. I don't post very often but do a lot of lurking and it is very helpful.

Sorry to hear this QE I would say don't read everything and speak to everyone at first. MN is an ideal starting point. But DO make contact with Portage, NAS (esp local branch if there is one) and that way you will find other local parents. You don't want to waste time but nor do you need to rush into anything or bombard yourself with info that means little and upsets you. But don't leave it too long either and put your toe in the water. Conflicting advice! I count myself lucky really that I didn't use the Internet or email when DS was dx so I had time to find things our for myself and made just a few local friends for the first year or so. That has all changed but it was a natural thing rather than like being chucked in the ice cold deep end iyswim!

DS had a diagnosis of ASD nearly to years ago (aged 3 and a half). I think it is right to say the worst time was the few months following the diagnosis. Once we got the right help (made some mistakes) and began to accept life was going in a different direction, things began to ease..... It will get better!!!

wow, tons of great advice here. Sorry not to reply to all but have just got in from work so just catching up.

I think I am just going to wait for the paed's letter/report from yesterday's meeting come and then once I've taken that in I will plan my next step. I'm thinking that will be to speak with the woman who does the co-ordinating of appts etc at the child development centre - is she what you would call portage?

As soon as is poss I intend to get as up to date a book as I can as everything I have read so far seems old to me. Most books are saying kids with autism have it for life but only a few grow up to leading independent lives. This really is the bit that is causing me the most worry. I know it's a long way off but I can't help it. btw do any of you know about Theory of Mind/the Sally-Anne test? I've read that autistic kids never get it - I tested my ds on this today and he didn't get it but I think he may be a bit young in any case - what do you think?

I am also going to work with dh to produce a brief profile of ds3 so it can be given to family and friends and playgroup. Someone I know did this with their disabled dd and is brilliant.

God, there is soooo much to try and take in isn't there?