New here and worried about my ds (possible ASD)!!!

[mysonben]

Hi, this is my first post on the forum. My ds who is 3 and 1/2 has a significant speech delay and is currently seing a speech therapist, following some concerns with some 'odd' behaviors at home and some difficulties socialising at nursery (he used to play alone with the cars and the trains 95% of the time) but some improvements in the last few months, he has been refered to a paediatrician who mentioned ASD but on the 'mild side'!!! We are now in limbo waiting for the next review in october to decide whether he needs an autistic assesment. This is very stressful as we were sent on our way without any guidance only the web addy of the NAS to look up for info.
Cheers!!!
Since the bombshell was dropped 6 weeks ago , i am frantic looking for 'clues' as to whether my son has PDD-NOS ( the most likely of the ASD) or not. It is very difficult for me at the moment, i can see some obvious signs or 'symptoms' on a daily basis , but my son is also quite affectionate, and will enjoy some joint attention with close adults . At first we thought he might not hear properly ( but he 's had 2 hearing tests and it's ok) because he ignored people talking to him quite a lot, but now he has improved and does respond very well sometimes not straight away but he shows good responsiveness generally. The trouble is he doesn't talk much or tries to expand on conversations outside his interests (cars, trains, books and puzzles about cars, his dvds, or noises such as ambulance sirens or car alarm or plane noises,...)He does however give short answers to questions and points to things a great deal (before he didn't we had to ask him to or he used to use our own hand to gesture towards what he wanted).
Well i could go on forever more ... so i'll stop now. ANYONE in the same situation ? I am a bit lost and don't know what to think anymore.

Well hi and welcome. I'm pretty new here myself, but there are some very nice people here I think

My son is ASD.. was speech delayed.. and he is sociable..always was (indiscriminately so as a small child.. didn't care who was there!) he still is but he's a one sided conversation man.. can monologue any person for hours on his obsessions with no idea that it's not appropriate!!

Not all children with ASD are totally withdrawn.. in fact my job is with children at the most severe end of the spectrum (non verbal teens with very severe learning diffs too and challenging behaviour) and some of 'my boys' are also affectionate and actively seek attention.. just on their terms!

It's hard when you are wondering if it's just (and I don't mean that lightly btw..) a speech problem or something else.. and nearly all children have some autistic traits! Sometimes the picture unfolds very slowly.

However at least your son is under the radar of the professionals.. which will help hopefully get the support he needs

Hang in there

BTW my son is gentle and passive in his autism.. give him his beloved pencils (he lines them up) and now Youtube to watch his fave clips and he's a delight....

Hi!
I cannot give any advice on ASD but when I first posted for advice on here (late at night),
some lovely, very knowledgeable, and personally expereinced peeps responded.

I'm sure quite a few of them will get back to you in the morning.

Welcome to Mumsnet.

bsac15

I'm not going through this now but have done in the past. DS1 is 8 and was diagnosed when he was 5.5 and the process started when he was 3.5yrs.

It does take a very long time but in some ways that is good as they do change a lot at that age as you have seen for yourself.

My DS ended up with a dx of Aspergers, although it is very mild. He also has dyspraxia. Apart from the speech delay, he sounds a lot like your DS. He is also very affectionate, preferred adult company to other children, can talk for hours on his favourite topics. Not great at conversation unless it is question and answers. Not great at 'sharing' a conversation - it has to be on his terms iyswim.

My advice, although a bit lame, is to try not to worry about it. What will be will be. If the paed says he is probably mild then it isn't so bad. He will find his place in the world. Make a note of the things he finds difficult, what he finds easy and anything you think you are worried about. The assessment will rely as much on your thoughts on him as anything else - there is only so much they can pick up in an hour or two of tests.

He has been picked up early and he will be able to start school with them knowing that there are problems and if it is a decent school, they will be able to make allowances for him and help him.

I also found that when the diagnosis came, after 18 months plus, it was a bit of an anti-climax. We all knew what was coming. I know not everybody feels the same - some people find the dx a shock even though they know what is coming. However, from my point of view, where you are at now, just at the beginning, wondering what is really happening with DS, was the hardest bit. I hope it is the same for you because it means that it can only get easier.

Anyway, welcome. Don't be afraid to ask any questions you want. There is bound to be somebody who has already been through what you are going through no matter what it is that is bothering you.

Just bear in mind it can be very addictive!!!!

I can't think of anything very useful to say, but my son is just turned 4 and I'm beginning to think ASD. He's actually very sociable but he has little obsessions, and although he loves 1:1 attention it's as he wants it. He has very low awareness of the results of his actions on others and himself, so he has little awareness of danger and seems to enjoy the reaction of hurting others, even those with whom he has a bond.

His speech is progressing well thanks to his wonderful nursery, but has recently been assessed as about 2 years behind.

I'm trying to work out whether I should make some attempt at getting some kind of diagnosis to help with the statementing process which the nursery and prospective school have both said I should go for.

So anyway, welcome! I'm newish, too.

hi and welcome theres lots of mums with experiance of asd on here

Hi, I am sure you will get loads of good advice here - and I see you have already! I think Niecie's post sums it all up really well.

We are currently waiting for a diagnosis of Aspergers for our DS2 who is 5.5 - it is a worrying time and the "professionals" can be staggeringly unsympathetic. The child psychiatrist who saw us initially took a detailed history, asked a few questions then snapped her notebook shut and said she'd see us in six months! Since then, we have had to push for more assessment and are getting a second opinion, but same psychiatrist also told us that even if we get a diagnosis we are "basically on our own" as they cannot offer us much in the way of behavioural therapy etc. Thankfully, his school has been really helpful and supportive. TBH, much of the info I have got hold of has come from MN, and "label" or not, my DS2 is still the same lovely boy and he will be fine, and so will yours.

Hello mysonben and welcome. I'm rather new to MN too; my DS (3) has a recent dx of ASD. My advice would be to try and stop focussing on clues or symptoms, because you won't be able to determine anything by yourself and will have to wait until the appt anyway. The side effect is that, if you're anything like me , you'll drive yourself mad. Instead, try and focus on the areas where you think your DS needs help, ASD or not: speech - and he's having speech therapy, so that's great. The socializing: I think it's great that you observe his behaviour, and that his behaviour is improving. I found the Hanen book/course "More than words" extremely useful: it's full of practical advice on how to get your child to communicate and interact more. There is a website; the material is expensive but you can get it for less from Winslow.
I found MN a real lifeline; lots of 'veteran' mums with lots of wisdom

welcome mysonben first thing dont read into to many things i did this and made myself ill

my ds was dx with high functioning autism when he had just turned 3 best thing for me was going to sn group meeting other parents and seeing how different and not so text book the children were maybe see if you can get to a sn group our local one is called SNAP

my ds didnt speak much and socialising was not very good can still vary from day to day how he will interact with others

what i will say is a dx doesn't change who your child is they are still the sweet adorable children and it is also nothing you have done could have prevented etc

since ds has been dx its been a blessing really as we have answers he has help SALT and we do different therapies at sn group he has more help with all his troubled areas interaction , socialising ,

his speech is now nearing age appropriate he has just turned 4 he has atypical speech sounds and tends not to speak to people only on his terms at times

i find playing role play games at home has helped with him learning how to play, using timers to keep him on a task for 5 mins, letting him choose a reward for sticking out the task ,

i had to repeat everything i was saying from making tea to washing my hands but all in 3 words to make conversation clearer for him to understand the words to the actions after few weeks huge difference in his speech formation

on here has been huge help for me got me through some lonely times with help advise and just someone to listen

my ds is affectionate the eye contact is there when his talking to you but flits when you ask him a question his eye revert away
his extremely bright and doesnt come across as anything that i was reading about as it varies so much along the spectrum

just work with what he can do already and continue as you are dont be afraid to ask questions or chase people up to help you

your not alone xx

if you have any questions do ask as i dont like rambling like i know what im talking about lol when all our children are different what works for some doesn't for others but im always willing to try new things and give my personal experiences to ohers

i will say alot with my ds has been like training him taking him for months along quiet roads with no cars and teaching him how to stop and look for cars progressing to bigger roads

same for playing teaching him again how to interract this only works with adults at moment not with children they confuse my ds his happy if racing with them and thats it

we used alot of pictures to communicate needs at home now and next charts my ds does need to know what we'll be doing and was very much a visual learner

now speech has come along we only use visual charts at pre school at home he needs to know in number what were doing first and second and so on

i'd like to know more about your ds he sounds quite similar to how my ds was maybe i can give you some ideas that professionals have given me for him

eye q tablets i found these a huge help his concentration improved and his willingness to be able to learn

also sleep issues are a big one for us he doesnt settle well melatonin was given by paed and now he sleeps again his learning has increased his behaviour has improved and his speech has progressed

bubblagirl, eye q tablets? Worth a try?

here

we use the strawberry chew ones

hello mysonben - welcome

There have been some brilliant replies on here - particularly from starlight listing the usual concerns we have.

The is/he isn't question literally drove me mad. I stopped eating for 4 days solid and all I could think about was ASD and trying to find out everything I could to try and work the answer out for myself. I still am a bit obessive to be honest but nowhere near as much.

It is quite right that no two ASD kids are the same. My DS (4 next week) went to see a paed on 7th May and I was told after a 40 minute appointment that included a SALT evalution that he "had a touch of it".....bye!! I was like . As far as they were concerned he would be fine in mainstream and off you go. It wasn't til I got outside that I thought "hang on a minute...what about the probs I am having with his speech?".

I got back in touch with my HV who rang the hosp for me and the SALT rang me back to talk me through it properly.

You will speak to alot of people who will tell you their experiences of ASD and no-ones DS will match yours. Your own gorgeous little boy is unique and always will be as will everyone else's.

Posting about my DS's traits was odd because I wanted people to come back and say "oh no....that doesn't sound like ASD" but inevitably the replies back saying "ohhh yes! My DS does that etc etc". Funnily enough it made me feel sad that it was confirming my fears but reassured me I was not the only one dealing with the same issues. There are some lovely very knowledgeable people on here, so post whenever you feel the need to, we are all here to help each other, xxx

Sorry, just wanted to share something that was a bit like turning a light on in my head.

My DS has always been really fascinated with trains. He loves going through railway crossings as the things he likes best are traffic lights (particularly when on red , railway gates or car park barriers, siren noises and of course trains. All of these things are at a crossing! When I was going through the is he/isn't he dilemma I used to avoid them because it was a bit like a poke in the eye reminding me that this was probably ASD behaviour. I also used to avoid other things that would bring up an issue.

Anyway, when we came out of our paed appt I was so proud of him for behaving and performing so well for the doctors that I offered him a treat. When I asked him what he would like to do he simply said "can we go and see the trains?".

I don't know why but this huge weight lifted off my shoulders and I said "YES LETS GO!"
The excitement in my little boys eyes was amazing. I drove us to a railway crossing that has a bridge right next to the station and we stood on the top and watched and waved at the trains going underneath. He was so excited and happy that I just cried.

Now I build my little trips into town via railway crossings (unless I am late lol!) and when he has been a good boy his treat is a trip up the bridge! It is my time with my little boy who can act how he likes and no one has to judge. It also is a fantastic bribery tool

I am sorry if that sounds a bit daft but it was such a pivotal moment for me, just felt like sharing

thats so sweet barmymummy im remember being the same avoiding things that made him stand out and now im so proud again was watching the trains

his move don now to having to buy disney car stickers so again its a good bribe he has to have these every day

si if he's good he gets them its wonderful how i can get him to behave by the bribe of a pack of stickers lol

Its funny you say that he has moved on because I have only ever known DS loving trains - haven't thought that at some point he may move onto something else Lets hope its something just as cheap!

ds was huge train fan i bought him disney cars and played with them with him and he has loved them ever since i may have introduced it to him got him cars dvd etc and now he loves his cars still likes his trains but is more into racing cars formula 1 on tv

playing racing games on his console or on computer and doesn't ask for his Thomas train sets at all any more he has learnt all names of cars characters

im glad i was getting tired of trains lol

Hi, my dd2 is a few months younger than your ds, she is being assessed for ASD/HFA, dd2 is almost non-verbal, she plays along side others but not with them, she loves cuddles and rough play, sometimes she will hand flap when excited and when she's upset she holds her ears. We are expecting a dx in the next month but we have had many verbal dx's of ASD and HFA. Dd2 is a very easy going happy child and we didn't notice there was anything wrong as she was so easy to look after from birth. We already knew that her sister had AS but we didn't notice that dd2 was on the spectrum until our GP picked it up whilst checking her over when she had a cold, he said dd2 did not react like most children do to having her ears and chest checked and he reffered her to the pead.

Now her traits are more noticable, she hates change in her routine, she can only understand one word (not sentences) ,she hates loud noises but loves making noise and she is obsessed with puzzles and numbers.

Her speech is improving slowly and her understanding is improving, i can now say 'shoes' and she will put her shoes on (which a few months ago she wouldn't). Things are slowly improving and we are hoping she will start MS school next year.

Hi mysonben

My DS2 was dx with an asd in Feb 07 - he is now 8. It was a very long process and very stressful - this board has been very helpful with advice and suggestions as well as support. It's nice not to feel quite as alone with it all.

Keep posting x

Hi, My DS is 5 and waiting for Dx in Oct- he has significant speech and lang impairment and ? ASD.

A lot of great advice here, loving your post Barmymuumy about that 'moment'- we are learning to embrace his funny habits- at the moment it is the cleaning aisle in Sanisbury's, he wanders down it like he is going through the gates of heaven!
Cillit bang
harpic
trust pink forget stains
calgon
finish dishwasher tablets
are a particular source of amazement for him, and DP and I stand at the top of the aisle smiling and bursting with pride like loons.

All the guys on here are great you will get some fab advice.

Thank you for all your replies. I see there are lots of mums here in the same situation as us. I always had the feeling that ds was somewhat a bit different , but we always put it down to his speech delay , now he has made big progress in this area , he can make 3-4 words sentences, but having a conversation with him is impossible, he doesn't seem to be able to use all the words he knows to give proper answers other than yes or no. And he still uses a lot of gibberish (his 'own language' that he used constantly before) even when he does know the words needed to talk properly. It is frustrating but hey! he is making progress so i should'nt complain .

Just read Novacane s' post. It reminded me of all the different quirky behaviors ds has shown us at diffrent times , at the moment he is still into opening and closing doors especially closing them , and he is absolutely besotted with the toilet, he goes up there for a wee-wee that can last 15 mins if we don't make him come out , it's worse at bedtime , he takes forever and he cannot stand any paper being left in the pan before he sit and will cover his ears when the loo is flushed. That 's his rituel with the bathroom at the moment.