Son just diagnosed as ASD, please can anyone help

[dazzlemewithdiamonds]

Please go easy on me, have never posted before, but now I could really do with some help. My 25 month old son was finally diagnosed with ASD a few days ago, and not only I am going through a grieving process and existing in a state of shock, but I'm in a panic as to what help would be best for him. We have to wait several weeks before we get feedback from the assessment team and details of NHS help, but they have implied he will only be given a few sessions of speech therapy and a few portage sessions before we're left to our own devices until he's 3 and can go to a special nursery (if we're lucky). Although at the moment he is a v easy child, whose only issues are communication difficulties, I am so scared that without guidance on how to help him he might regress, or just that we might be wasting time that really could have made a difference. As I said I'm still shellshocked, and am overwhelmed by all the information I've come across on the internet, so would be so incredibly grateful if anyone could point me in the right direction. Otherwise I fear I might drive myself mad with the terror of letting my little boy down. Thanks so much

Hi

Mine did a lot of dragging me around and pointing. He was also very huggy and cute. I often used to wish he would talk and then he did and then he wouldn't shut up! It's all very scary now and don't beat yourself up about it. Also - take your time. Don't feel that you have to rush in with lots of strategies. I watched a programme on tv about Son Rise thought 'thank god my child doesn't have Autism' (emit hollow laugh on looking back) but thought the whole ethos of playing over acting the imagainative thing was a really good idea and something along the lines of how I grew up (I think I lived in an imagainary world for much of my childhood). Well he is Autistic and it just shows how different they all are because he was and is nothing like the ones on the TV (obviously they are going to pick the more 'dramatic' ones) but we did used to play very imaginatevly - pretending we were at the seaside in the sitting room and jumping over the waves, etc. He loved this and I think it really helped.

Your son doesn't sound as if he has any worrying behaviours yet - you might find that the terrible twos are the 'terrible threes' - we certainly did! He is clearly trying to communicate with you so that is brilliant. Take it steady.

Mine is going to be 14 soon (EEEK) and is utterly lovely. He's mooffing round the kitchen at the mo making himself a marmite sandwich having just demolished a whole box of couscous and a chicken leg. Hey ho how time flies. Good luck and all the best.

Oh Dazzle, Lots of love to you and your family.

Even though it might not seem like it, you have done the most difficult things already - got the dx and looked for help. So many of us go into a kind of fierce denial - it took me a very long time to face up to it.

Best advice I can give is that ASD is very much the 'Emperors Cloak' but the mother is by far the expert in their own child - Their personality often affects how they need to be taught as with all children. This is where you know better than anyone else.

My DS was silent until 3.5 yrs then suddenly able to recite his alphabet (SALT & Paediatrician are GODS). He's now 8yrs old, doesn't shut up and in a mainstream school with full-time 1-2-1 help. He even did the SATS tests! Classmates love & protect him. DD is 4 and he is a fantastic & very loving brother.

We mourn the child (& family life) we dreamt about (even now) and feel guilty about this, but this far in, we know that we would be devastated to loose what we have. We are happy as a family.

Do you have a DH / DP? They seem to struggle to find others in the same situation. Would offer my DH to yours for support if wanted...

Suggest an american site of "Wrong Planet" which involves a lot of chat with young adults with ASD. If you're looking for hope - it really is out there.

Also, book "Bring on the Idiots" gives hope in so many ways too. It's written by adult with ASD.

Yes flyingmum, DS is so easy and happy that it seems too good to be true. Am on tenterhooks waiting for some 'inevitable' deterioration, esp when he gets more frustrated at lack of ability to communicate. At the mo he has ways and means of communicating wants and needs to perfection, but he's still a baby really so needs not too complex yet.

Tallulah, am sure my DH would appreciate a fellow DH to talk to. I do feel bad that he doesn't have anyone but me to talk to properly, whereas I've been spoiled in that dept so far, esp since coming on here! And I do suspect that like you, we will always feel the odd pang of regret and loss for the family we hoped for, no, expected! My DD is nearly 5 and altho she worships her brother it hurts to think they'll never have the brother/sister relationship her friends have with their siblings. But then I suppose she's never known him any different. Blimey, shameful to admit it, but you never think it'll be you posting on a special needs board! Now it's already becoming a lifeline

So glad you're feeling a bitr happier.

My ds3 sounds a lot like yours- and at 5.5 he's still the happy l;ittle man, he started talking a year ago and whilst he won't ever (in my guessing) talk properly he ahs functional communication now which is wonderful. he might never want a conversation about how dinosaurs are the most amazing things ever but he can tell me if someone took his game. I'm grateful for that.

His behaviour has the odd glitch, often when least expected, but in comparison with his brothers he is a doddle and impossibly easy to parent.

Dazzle - My DH was lacking in experience of any child so DS is not battling against any comparisons there or even with his sister.

Believe me ASD or not, they WILL share, they will hug & love each other, they will argue and fight AND they absolutely will stick together & join forces against you and others. I haven't met any ASD siblings that don't. Mine are just 'organising' the tv viewing at the moment.... Third & Bird v. Basil Brush.

Where abouts in the country are you?

Tallulah, it's unimaginably fab to think of my two having a bond and interacting together, it's just that as things stand my ds tries to ignore dd completely and whenever she tries to copy us in doing something that's making him laugh etc he cries in dismay. It's so sad as dd is besotted with ds and v maternal towards him. Only snag is because she's v loud, chatty and dominant I think she turns him off completely and he's come to view her as nothing but a pain. In fact he acts like comedy henpecked husband model, just trying to stay under her radar. She's v confused by this but keeps persevering and it's agonising to watch as you can see the more she tries to intervene in what he's doing the more he wishes her away!

We're in Twickenham, SW London

"Once he has understood that "do this" signifies "copy what I do" then you have taught him the basic root of all speech : imitation"

This is very interesting sickofsocalledexperts.

Dazzle, as you take stock, you may find it helpful - before deciding what programme (if any) to follow - to have a really clear idea of how your own child's issues match and differ from those of others. For instance, earlier in the thread I was about to leap in and urge you to buy the books that are my personal bible - but then I read sickofsocalledexperts' post and realised that for her little one, my book wouldn't have been the right starting point at all (because my book assumes there is a pre-existing tendency to imitate rather than showing how to imitate)

Some things can be guaranteed to do no harm - like saying "cuddle!" every single time you pick him up for a cuddle from now on. But I think that with language a lot of the art of helping them is working out just what's going on with your little one. My son is very like Kettlechip's son in a lot of ways but very different from the sons of others on this board, and even some of the things that work for Kettle don't work for us (unfortunately, in the case of potty training!!!)

Dazzle, I live quite close to you. Let me know if you want to chat by phone, as you could even come and see a VB session and see if it's the right thing for you?

Sounds so familiar! We were so proud the first time they argued. (Bad parents! )It was a long time coming & quite recent. He used to ignore her too. She's so loud, you wouldn't have thought that she could ever be ignored.

My DS at the tender age of just 3 announced one day, "Sometimes X is different and we just have to ignore it!" When I asked her what she meant she just flapped her hands and hummed. But she's very matter of fact about it and it's not an issue at the moment.

Now they have shared interests in Power Rangers, Horrid Henry, books and Wii Fit! Your DS is still very young by any standards to want to share his parents attentions.

My nephew is just 18 months older than my DS, very loud & physical but some ASD kids respond (eventually) to this OTT behaviour & theatrical expressions and mine certainly does. He loves the rough & tumble.

We're in Leeds.

Services are very disjointed in places and it's often left to the parents to push for the help. We did get it. Now we're just missing the respite care and not holding out much hope of it coming anytime soon.

Sickof, thanks, would be great to have a chat and maybe check out a VB session. Much appreciated!

hi dazzle, wrote you a long reply earlier but laptop inexplicably ate it just as I was pressing post. Grrr.

What I was going to say is, my ds1 was surprisingly like your ds at the same age - other than the using your hand as a tool bit. It's interesting you say that was the ASD clincher for you - we've had many debates on here over the differences between language disorder and ASD as they seem very closely linked in children like my ds. For us, removing aspartame from ds' diet made a huge difference in terms of restoring normal eye contact and shared attention. Nobody (as in professionals I see, MNetters are a bit more clued up!) can explain why but I know it's made an enormous difference.

Just today I've been told ds probably doesn't have ASD (his mild autistic traits have diminished so much that where present they're very subtle now), but if he'd been observed at 25 months I'm sure they wouldn't have been so confident. I'm not questioning your sons dx at all, just making the point that children can change dramatically over a period of time, and with the right intervention and help, your ds can and will make progress.

The book I've used which I found really useful was by Julia Moore and called something like "Playing, laughing and learning with children on the autism spectrum" - it is great for teaching play techniques, developing expressive and receptive language.

and, I meant to say, available from Amazon!

Other books I read were "Daniel isn't Talking" which is a fictional book based on a true story. It follows the progress of a severely autistic boy who makes amazing progress after ABA. I used some of the ideas they described in there and they worked with ds. The one bit which really didn't ring true is that they potty trained Daniel by catching one wee on the toilet - after that he was completely trained.. I was training ds1 at the time and can only wish it had been that easy.
BTW Hang in there lingle, it will happen!!

And I also read Autism Spectrum Disorders - A complete guide by Chantal Sicile-Kira.

Kettlechip, what you say is v interesting. What else helped with your ds apart from cutting out the aspartame? I don't think my ds comes into much contact with the stuff (unfortunately, as I'd like the chance to try cutting it out!). he'll only ever drink water and can't think what foodstuffs it might be in. Thanks so much for book advice, will be ordering a couple of those pronto!

If you're interested in nutritional methods you might want to look at allergy induced autism- there's a website if I remeber correctly (will go hunt for you) and the sdifference in following that diet for ds3 is speech or none, and ds1 whether we can keep him with us behavioralyy (as opposed to boarding out weekly at school, foster care not for us and our boys).

allergy imduced autism

there's another dietary thing that worked for ds1 for a while but was complex with his actual allergies- salycylates (sp?); aspirin like compounds that cause some kids to react in the same was as aspartame is said to, but in completely different foods- all natural ones.. raisins, apples, tomatoes, etc. Well worth a search and a trial of an exclusion diet imo.

If you are in Twickenham you may want to check out a group called Me too! It is a support group run for families and siblings with SN and not only will you meet others in the same boat locally you will find out all about the local provision, what to go for and what to avoid. They run statementing help for when that time comes and have lots of activities and things that are suitable for those with SN. the duo Singing Hands was 'born' from this group and they are great, lots of signing to go with familiar nursery songs. From memory it meet just outside Richmond on Friday mornings and Wednesday pm - best to check that though. I will try to find a link for you.

me too and co

Dazzle: I'm sure you have lot's of reading material for the moment but how are you today? Go easy it's a bit of a marathon at first.

Ds had no language at 2+ but he did grab/push my hand and did babble and make lots of noise! ( He is still noisy but now age 9 never stops talking!) He didnt seem to understand anything and at first I thought he was not hearing clearly! He liked toys that made noises or sang annoying little songs so to get him to tune in (and because he did not like change) and understand our patterns I used to sing phrases to him and keep different tunes for different meanings ( going out the house/ park/ sleep time. Each child is so different and my son is very unique.

Hairy, thanks v much for the Me Too info, that sounds like a great resource, def sounds like something I should check out. Have been v self-conscious about taking ds to 'normal' playgroups recently, feel everyone would be looking at him wondering why he was different (paranoia??). Just have to pluck up courage to go to a new group on my lonesome! Especially when it will make ds's problems seem v real, if you know what I mean.

Tallulah, thanks for asking, am so much calmer but still a tad overwhelmed by all the things to think about and still feel pretty numb. Also have to try and keep up brave face/ normal routine for dd. Even the school run has been agony at times but without being forced to get out of the house looking presentable probably, make that definitely, would have sunk even lower. A couple of books have just arrived from amazon, now i just need the time to read them, as am itching to!

My DH will be around later this evening if yours needs another to talk to. Will log on at around 8pm if you like & maybe arrange something then.

It's such a blur at first, I forget most of the books that I read in the early days. Just don't forget to "feed the ducks", i.e., Walks in the park etc. I got more onto some sort of track once I realised this. The ASD is always a moving goalpost, abilities, interests and obsessions change constantly but it helps if you have a few fun things in the week to look forward to. (Probably doesn't seem like that just now though).

Just in case you were in any doubt. You really are doing the best for your child and family already.

Will be back on line later tonight.

dazzle, it was a real fluke that I discovered the aspartame thing. I noticed at a birthday party that ds had a dramatic reaction to froot shoots when he drank two of them - I'm talking screeching and literally bouncing off the walls, so I looked at what was in them and realised they weren't that dissimilar to the Robinsons fruit squash he was drinking and requesting more and more of, which I naively thought was ok as it was everything-free! Once I switched to water or natural fruit juice, the change was instant and dramatic. Eye contact is now totally normal, compared to a period last year where I had to really work hard to get it.

I then did the Uni of Sunderland urine testing and it picked up that ds may have a gluten intolerance. I really must trial a gluten free diet but he's improved so much anyway I haven't done it yet. Basically, the 4 things they think may affect the behaviour of a child with ASD are gluten, casein, MSG and aspartame - the theory is that ASD can sometimes be caused by metabolic issues so a child with ASD cannot process some foods in the way that an NT child can, and the result is behavioural issues and autistic symptoms. MSG crops up all over the place and isn't always clearly marked - sometimes they call it "natural flavouring.." so labels can mislead you.

Can go into more detail if you need it, don't want to bombard you at this stage! How are you today?

Hi kettle, afraid I'm on a downer today, back to being v afraid and feeling v bleak, ever since reading Autism Spectrum Disorders The Complete Guide by Chantal Sicile-Kira. It does have useful info but overall implies that having an ASD child is a huge, huge burden (not that she uses the term) and will remain that way, love them as you may. There is little mention of ASD children who don't need a lot of care all their lives, or who DO end up communicating with you pretty well, and particularly sad was the section on NT siblings, who apparently will give up on their ASD bro or sis when they repeatedly get no response back, and then they won't invite friends round as they'll be mortified at 'their ASD brother coming down the stairs fully naked'. Kind of paints a worst case scenario and has freaked me out somewhat. Then I think of what my little guy is actually like, no hassle at all, and it reassures me, till I think maybe she knows best and however he is now is no reflection on the torment he and we will have to face in the future. Aaargh!! Back to panic stations and doubts that I'm up to all this