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Very Worried 15 month old DS has ASD

(16 Posts)
Hedger Tue 04-Mar-14 16:05:39

Hi

I am so worried about about 15 month old DS and was hoping for some advice. For the last three months or so I have begun to think he may have ASD. He has always slept well, ate well, crawled and walked at the right times, etc. but the things that worry me are as follows:

- He doesn't have much eye contact. He will look at us from time to time but not as much as other babies his age. He does smile and laugh but perhaps not as much as other babies his age.

- He babbles a lot (and has done for a long time) but no words at all.

- He doesn't seem to follow instructions like other babies his age. For example, at his baby classes he doesn't follow any of the movements (clapping hands, etc). We can get him to play with toys and can teach him how they work (putting things in slots, etc) but we really have to spend time showing him and he won't consistently do it.

- He doesn't seem that interested in things. For example, we took him to the zoo the other day and he just wasn't that interested in the animals. He seems like he's daydreaming a lot of the time.

- He doesn't really interact with other people. Again, at his baby classes, he ignores the other babies and adults and wants to be off doing his own thing away from the others most of the time.

- He doesn't point at all, show us anything or seek to get our attention.

- He waved goodbye for the first time the other day but only after a lot of coaxing.

- He loves swinging doors and spinning things.

- He only responds to his name some of the time. Often he ignores us.

I watched a video yesterday of babies his age comparing ASD behaviours with normal behaviours and that's when it really hit home. We just started employing a nanny a few days ago and she says she can see the same lack of interest and communication.

I am just so upset I keep bursting into tears and I don't know what to do with myself - I feel like my world is crashing down around me. I am going to the GP tomorrow to ask for a referral but what I suppose I am looking for is (a) reassurance (has anyone's child's had similar traits but overcame them with time?) (b) advice as to autism experts in London (we are prepared to go private to get early treatment) and also any support groups or helplines for just someone to chat to as I really am struggling with this.

Thanks so much in advance.

salondon Tue 04-Mar-14 16:27:51

Big hugs Hedger. It's very worrying and mine started around this time too.

I'll be honest(because honest mums helped me find my way around this maze), mine did not outgrow this and I see a few redflags. I think you can try the ADOS test yourself to see.

In UK you won't get a diagnosis this early. BUT you an tart nagging people and start intervention.

For starters get his hearing checked and keep a video diary.

Try and do some sensory integration reading and work on that too.

In USA, Canada and scadenavia, your would have got some eibi support. Here you should ask for portage help.

This is a very difficult time. I cry when I go through documents of that time.

PolterGoose Tue 04-Mar-14 16:44:04

Message withdrawn at poster's request.

sammythemummy Tue 04-Mar-14 17:16:56

Hi hedger

I'm sorry.. It's a horrible feeling I sympathise. Best thing you can do in my opinion is go into fight mode and start early intervention now whilst you wait for referral( this can take several months).
I personally wish I started earlier with my dd but she was my first and even the professionals couldn't make up their minds about her.

Look into ABA and do basic speech therapy with him (invest in a book called More than words)

I've just realised that's he's only 15 months...there is time for him to catch up but I would watch him very closely.

I wish you the best op

Thankgoodnessforcheerios Tue 04-Mar-14 18:12:39

Hi Hedger,

Hugs to you, its a very worrying and emotional time, I too have a ds with possible autism, he is 28 months though, we have his assessment next week. I think he was about 20 months when I realised he was not just a slow developer. I was reassured by family and friends that he was fine and I was worrying too much, and boys don't develop as quickly as girls etc. However I knew in my heart something was wrong so I called my health visitor and sobbed down the phone. I'm glad I did, as the above posters have said the sooner you start the process for getting a diagnosis the better. I have found a children's centre locally especially for children with special needs. They have been fantastic through this tough time.

And like Polter recommended a detailed diary is a great idea as its easy to forget things when you have so much on your mind.

zzzzz Wed 05-Mar-14 13:02:30

I'm only on my phone today and it is my ds's birthday, but I wanted to respond. The early days were desperately heart achingly worrying for me. I was so scared for my little boy. What would happen to him? How to keep him safe, to help, to rescue him. Mine has been assessed and is very developmentally different, language disordered and some presentation of ASD/HFA/OCD/??? grin

My words of wisdom such as they are are these.
Get him assessed and diagnosed through the NHS but do not expect them to be able to shed any light on what he will be like or to provide any real intervention.
He will always be more like one of your gene pool/ family than like other children with the same dx
There will be love and happy times regardless of dx.
The biggest and best source of "what to do" help is this funny little corner of MN.
It is harder, it isn't miserable.

LindiRioni Wed 05-Mar-14 16:23:05

big hug to you , I know how you feel.

I would advised you to talk to HV or GP right away. you have to go with your feeling. you know your child best.

I was like you and cried every hour, worry until sleep to the next morning.

My boy was diagnosed at 2. you have to push it if you think he is ..by doing this you will get support that he needs.

What I have done is quite upsetting, I was watching a lot of video on youtube for other children behavior and sytom. It was not very nice but this is was only way to show my GP about his sytom. initially they did not want to give e the diagnosis at all.

I hope he is not, nothing wrong with him and he is just quiet boy and a bit delay.

Good Luck

Babiecakes91 Wed 05-Mar-14 17:56:24

I have son who will be 3 in May and I knew when he was 18months he was on the asd it took me a while and a lot of calls to our paediatrician but we finally got him diagnosed in January.
I was first told he would learn the words he has lost, then that it could be glue ear (hearing test was normal) than finally they had to look at him further and sent him to the specialist who diagnosed him in 2 hours due to my sons stimming, living in his own wee bubble and reports from his nursery and speech therapist x

Hedger Wed 05-Mar-14 18:54:02

Hi Everyone

Thanks so much for your replies.

I took him to the GP today and she referred him the community paediatrician. It was a very sad 15 minutes - she watched as he played with toys on the floor and completely ignored everyone, despite us putting our faces right in front of his face and calling and calling his name. There was very obviously something wrong. I am just devastated and I have no idea how I am going to get through this - can't eat and can't sleep and can't stop crying. Luckily DH is being amazing as usual and doing his best to keep me together.

Anyway, thanks again.

chocgalore Wed 05-Mar-14 19:11:39

Sorry, hedger. This was also the hardest time for me (noticing DD was different, yet not having any answers yet. I just felt like in a limbo, desperate and helpless). Even if (after all, it might also turn out to be nothing) your DS does have a developmental disorder, he is still the same lovely boy and trust me, things will get easier. The feelings you are having right now are normal.

It might be a while until your DS is seen by the paed. Check out the book"more than words" by hanen and look into Aba. There are a few things you. Can do to help your DS. and keep popping back to this board.

PolterGoose Wed 05-Mar-14 19:57:55

Message withdrawn at poster's request.

Hedger Wed 05-Mar-14 20:00:21

Thanks chocgalore.

How old is your DD now and how is she doing?

The thing that worries me most is that he shows no affection for me and I feel that he doesn't love me sad.

sickofsocalledexperts Wed 05-Mar-14 20:27:36

Hedger

I would go to Dr Daphne keen privately if NHS take too long and then I would look into ABA, which can really help significantly if started this early

It is a terrible time, but there are actions you can take now which can really help.

Good luck

StarlightMcKingsThree Wed 05-Mar-14 20:41:13

Hedger Your thread has brought me to tears. I was you once.

People who had gone before me told me that it would get easier and that autism wasn't the worst thing but it really was, then. I looked at those people in horror.

My ds is 7 now. He has ASD. It isn't the worst thing.

What you have right now is a void in which you are putting your worst fears. When you fill that void with information and realise that diagnosis is not the same thing as prognosis you will get stronger and you will learn how to understand the love your ds feels for you if not shown in the conventional way.

I know I can't convince that there will be better times because it will be impossible for you to imagine at the moment, but when I was where you are now it was the worst time of my life. My life is now filled with joy, hope and mostly I love it.

Take extremely good care of yourself over the next few months and always, ALWAYS critic carefully any 'intervention' you are offered in terms of the benefits it affords over the costs/travel time/money/time when you could be doing something better etc.

chocgalore Wed 05-Mar-14 20:55:32

Hedger, Dd is 6 and doing fine. She is delayed in a lot of areas esp speech/language but is making steady progress and an absulolute joy to have :-)

LindiRioni Wed 05-Mar-14 22:52:10

your thread made me cry too,

I remember that day I was told he was ASD. I was well prepare but it was still upset, I knew he was since 14 months.

Be strong , we all here , we were there once like you.

ASD is not the worst thing in the world if you put the right intervention. you are lucky to be on Mumsnet. Every MNers on here are very helpful and lovely. Don't be afraid to ask question.

I would advise you to take everything NHS help for now, once you got up on your leg then find the right intervention.

I did not about Mumsnet untill late, my little boy is 4.5 years old now, been doing ABA for 6-7 onths and he is now the different boy.

All the best.

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