help! just been told my son may have ASD

[Philomytha]

Took DS (24 months) to the paed for a followup of an infection he had earlier in the year, and asked her about his not talking. She watched him for a bit and asked questions and said that he looked like he might have ASD. Got HV coming to do development checks next week and will probably end up being referred to the specialist unit where I imagine they'll be able to diagnose him properly.

I'm a complete wreck about it all. All the little things that have seemed 'quirky' about him are staring me in the face now, and it's so hard to see my beautiful little boy in there. He rarely makes eye contact, doesn't seem interested in me except as a tool to obtain what he wants, ignores other people's social overtures and would like to sit all day on the foot of the stairs rocking back and forth, or running up and down moving things around for no reason. I'm terrified of what will happen if he gets worse - right now he likes change and new things, eats well and doesn't have major tantrums, but I know that lots of ASD children have these sorts of difficulties. I'm scared about what will happen to him in the future, when he grows up, and so sad because it seems like all my 'normal child' dreams about his life are never going to happen.

I guess some other mums here have been where I am. Any words of wisdom?

No words of wisdom, but definitely know what are you going through. If it helps, my little boy is absolutely fine about change, doesn't have big tantrums and is in fact very easy-going despite his ASD. They are all so different, and a lot of what you have heard it of a "typical" autistic kid, yet so few of them are that typical kid. It is a long way off yet, but could I just say that the thing that has made the most massive difference to my ASD boy is a home therapy called VB - verbal behaviour, a form of ABA. I wish a mum had told me about this when my DS was only 2, as I reckon we could have got results a lot earlier. Even if you don't start it formally, you can use the techniques and my non-verbal son became verbal within 4 months of starting. It is probably too early for me to ramble on, but please feel free to ring me on 07809486616 if you want to talk - I can remember only too well the desperate feelings you are going through. But your boy is still in there, and there is hope. Big hugs

I have just had a diagnosis of ASD for my 3yr DS. He is similar in character to the way both you and aquariusmum descibe your DSs. There's a lot to think about in the early days - you haven't had a formal diagnosis yet but if you do, then it seems to open a lot of doors for help...

Take each day as it comes - I am at the moment. Feeling crap some days and more optimistic on other days.

Sorry not much help as still trying to come to terms with DS diagnosis, but wanted to let you know there are others in similar positions to you.

My son was diagnosed earlier this year- when he was 2.1. I also described my ds behaviour as quirky- He did and still does very strange things. He has a lovely personality that shines through but doesn't have a singe spoken word. There are lots of things that you can do to help him dietary intervention (Gluten free casein free diet, taking out all the food baddies etc) PECS- to help with communication, home programmes (ABA, Growing Minds, floor time) Biomedical(fish oils, supplements etc). There are many many more (some are expensive some are free, some are very time consuming but there is loads that you can lok into and try.

A really useful thing for us was to get a developmental assessment done to show which areas Ds is behind in and although its hard to see written down I know which areas to work on. There are things that you can do simply before getting a diagnosis. Consider Cod liver oil and cleaning up the diet.

For us we found that adding cod liver oil that it helps Ds concentration and cleaning up his diet and adding supplements has help behavioural issues. Also understanding his difficulties with language and introducing PECS. It really helped him ready for learning. I have seen a lot of improvement in my ds he is more aware and has a much wider range of interests however his speech comes and goes. My biggest advice is dont bury your head in the sand and ignore it but also dont expect miracle. Just take on step at a time.

Sorry Im really rambling if you would like any advice on anything let me know although Im only 6 months into this myself.

Thanks, everyone. I'm sort of scared to hope right now. I know there are all sorts of autism (my DH has some autistic traits and still has a successful and happy life, even though he stupefies dinner parties by staring at his plate whilst talking nonstop for half an hour about physics ), and I know that my son could end up more like DH, but I also know that it could go the other way. Having had my initial hopes - he was such a bright, happy, ordinary baby - demolished, I feel like if I build them up again it'll come crashing down again. I think time, and concrete understanding of what exactly his problems are and what can be done, will help with all this.

I've read about some of the things you mention - diet, ABA etc - but at the moment I have no idea what will help, or even how to work out what would help him.

Philo- the thing is no-one really knows what will help its a game of trial and error. What Id suggest is make the simplest changes now and the least expensive and see how it goes. SOme people swear by Biomedical stuff others think its rubbish the same with ABA. Its all about choice and lifestyle.

Try one thing at a time- until you get a diagnosis some things are unavailable to you so Im in favour of diagnosis.

Firstly you could add cod liver oil? I would recommend mercury free brand - Eskimo or Nordic it costs£14- 18 a bottle which last for us about 6-8 weeks (not cheap). Every child could benefit from taking these (but not all children do) then maybe read a book like "playing laughing and learning with children on the autistic spectrum"- tells you how to play games and interact to build language and social skills I got my copy from the library. Like I said try something and then give it time to see what affects it has.

Also consider a PECS course 2days =£140(I believe you can get funding if you would have trouble meeting costs). Its a picture exchange system that helps children visualise words and learn to request. Its been really good for us and my ds has really got to grips with it and right now its his only form of communication. Some people prefer makaton (a kind of sign language) but my ds doest have imitation skills for that.

My mistake was rushing in at 100 miles an hour and I feel exhausted but I have seen improvements so its encouraging. SO give yourself time to get used to the idea. Its not certain that he has autism yet but none of these things will do your ds any harm and they will work on his communication.

Have you had a look at the CHAT test. This tests points out red flags for autism. pointing and shared attention is very important (my ds still doesnt do this).

Hi Philo, sorry i dont have any words of wisdom, i wish i had some for you. Your son is very young only two and if he does get diagnosed the ball will be rolling to get the help he needs. There are quite a few parents on here with kids who have Autism so you are not alone as i remember feeling alone and helpless before ds got diagnosed. Mumsnet really helped me as i had been feeling exactly like you are. Its impossible to tell what our kids will be like in the future we just have to wait and see and hope that we can do the best for them.
Take Care 2mum

Hi Philometha,
I remmeber the feeling so well. Take one day at a time and try and read up on as much as you can.

My dd is 6 and has been doing aba (Verbal Behaviour) for 3 years now. There are a lot of things out there - and you'll get the help you need but it'll be a long hard struggle - you'll have to push for everything and be stronger than you ever thought you could be.

I would suggest getting a diagnosis and meanwhile prepare yourself by reading and talking to others to find out what's next...

Staryeyed has given you good suggestions and I would second all of them. (Cod liver oil, pecs to start off the communication, and the book for the games.) Try not to lose sight of the fact that he is still your little boy and loves you and your company - only can't show it as we expect.

Try one more thing - when he's sitting at the foot of the stairs and rocking - sit down next to him and rock along with him. My dd used to give a teeny tiny sideways glance and a little grin after about 5 minutes of doing this. I was playing with her in HER way and she liked it. It really cheered me up - showed me that there WAS someone there who responds, loves, plays... and now 4 years on from then she really does play and chat with me (at her own level).

Hope I'm still making sense...

Thank you all. Yes, I have read the CHAT stuff and ds does hit all the warning signs - not pointing, not looking when other people point, not really doing pretend play. That was when it started to sink in that this was real.

Sweetgrapes, that's a really good idea. He likes it if I join in with him rushing up and down the house too, he starts laughing uproariously. Incidentally, is inappropriate laughing an ASD thing? At playgroup the other day (this'll identify me if there's anyone here who goes to the same playgroup!) he was stacking up all the little chairs and nearly collapsing with laughter whilst doing it, for about 15 minutes non-stop. His laugh is so contagious, it made everyone around happy too, but there was no obvious reason why he was laughing, he just started. He does this a lot.

Cod liver oil does sound like a simple thing to try. DS has always eaten pretty well and healthily, and he's still breastfed as well, but extra help can't hurt. I got all the books I could find in the library on autism out, and they were a bit grim reading in places (every few paragraphs they'd mention something ds does that I'd thought was normal and is actually ASD) but had some good ideas and hopeful stories. I'll see if the library can get hold of the title you mention about playing.

Welcome to the SN board.

I have 2 boys with ASD. Both are now very different to how they were at 2yrs. At that age ds1 had no language skills at all, barely realised if I was in the same room as him, and spent a lot of time sitting in the cupboard under the sink with the doors closed. He's now 7yrs old and doing very well at his mainstream primary school. He happily chatters away to anyone and has friends. Ds2 at 2yrs old was completely hyper and extremely volatile. The slightest little thing would have him throwing himself against walls or on the ground in fury. He had some words but none of the useful ones like yes, no, Mummy, Daddy, more etc. He seemed to find it impossible to stay still for more than a moment or two and was generally exhausting. He's now 4yrs old and at the same school as his brother. He seems to be popular at school and always has children asking him to come and play with them. Like his brother he is doing well academically too.

Dh is almost certainly on the spectrum too and will also give long speeches about his latest obsessions.

I found that the older books about ASD were pretty scary and depressing. The more recent ones which deal with specific difficulties, rather than being a "This is autism" book, are much better IMO. They still talk about the difficulties but usually give at least some idea on what can be done to help.

Hi there, I have one DS aged 4 with HFA. Right now, you feel like you were in a car crash, and the car hasn't even stopped crashing yet, it's still somersaulting down the road. It gets better.

No time to write now (am off to bed), but whatever happens you'll come out the other side, I promise. My severely autistic son was dxed at 2, now aged 8 we are doing fine (and he's a seety- over affectionate rather than under).
here's my blog/autism product site perhaps have a look at the pre-diagnosis section.

bugger- try again

seety? sweety!

Hi
Can really identify with how you feel. You kind of have to grieve for the child you thought you had but at the same time celebrate the lovely chap you do have. The books vary. I read some out of date ones, scared myself silly and got depression. Be very selective with the information you take in and also give out. He's still really little and lots of two year olds are doing similarly quirky things. You might find that some of your family have difficulty coming to terms with the idea (husbands and paternal grandparents in particular) but that again is usual.

My chap is now going on 13 and is absoultely lovely. He made the Christmas cake yesterday, is communicative, empathetic and a really nice bloke (if a bit odd at times!) I still worry myself ragged about him but not as much as when he was three. There's tons of good advice on here and the good thing is that if he is diagnosed as ASD then it's really early so any intervention you do will work more effectively.

I did identify with the laughing thing - I remember mine doing that.

Every good wish

Hi Philometha,
Just wanted to say that my 11-yr-old (who has Asperger's) would say that many of the books about Asperger's and autism talk a lot of rubbish, are quite unkind, and should be written by people who actually have it and KNOW why they do things.

hello philomytha... I can also identify with how you feel... still don't have a dx for my ds who is 3.7, but we have seen the paediatric consultant(who said "asd traits") and have speech therapist and some other stuff going on with help for my ds, I am probably still too much in the early stages to offer any advice, just empathy from me!

lots of what pp's have said really rings true for me, and it is always great to see what others are up to in terms of trying to help.

Hi, yep, know how you feel. I came to the conclusion myself about my DS(nrly 3) this year after a particularly difficult outing with him. Waiting for further assessments but paed agrees with me that his eccentricities are probably Aspergers traits.
It's been quite a relief TBH, it's meant we can forgive him for being so difficult and also ourselves for finding him so difficult iyswim.
I'm lucky because DS is so like my dad that it seems they both must have it and I can see that my dad has never felt it to be a problem. In fact he would probably deny he has it but my mum would say otherwise! So we have this great role model to learn from and it seems just a question of programming DS where necessary over the years. In the meantime, he is a very content little boy and great fun (in the right environment LOL.)

I'm sorry to hear that. You've got a good head start by having it picked up so early.
DS has ASD and is 10 now. Get all the help you can and remember you're not alone.
Good luck

I just want to add my support. My son (6) was diagnosed in September. Most of the time you wouldn't realise anything was wrong. He is such a bright happy boy.

While the Dr was going through the diagnosis, I realised, even more than my son, she was diagnosing me too.

The positive is that with such an early diagnosis your DS and mine will learn early the skills needed for life. I taught myself things as I went along, responding to situations I found myself in.

I haven't posted much on these boards because its hit me harder than its affecting DS.

Wow Dingdong, must have been a strange experience for you mentally ticking your own boxes at the same time. I think it's great for these kids to have role models.

It didn't really sink in till afterwards. Then I sort of went into a "total personality meltdown", where I couldn't figure out who I was anymore - that was a big low point. Now I'm getting back to normal and getting on with life again.

Having supportive friends helps.