DS1 likely to have autism diagnosed...help I feel so down.

[nicand2]

My DS1 is just 2 and after a lengthy meeting with our hv she has referred us to be diagnosed. I am almost 100% that he will be diagnosed somewhere on the spectrum as I've now been alerted to the classis symptoms.

His speach is delayed which is why I approaced the hv but apart from that he appeared to be totally normal but now a lot is falling into place eg he has never pointed,loves spinning wheels and doesn't understand instructions. However on the plus side is a very happy boy, interacts well with others and behaves well.

I just feel so overwhelmed and sad at the moment. I had my second baby 11 weeks ago and w've also moved house to an area I don't know at all so I feel like this has pushed me to my limits and I'm really worried how I'm going to cope.

My main worries are,
1)How muxh progress whith his speach etc will be possible
2)could other aspects get worse ie his behaviour
3)Will he lead a normal life in school etc?
4)is ds2 likely to have it too?

I would appreciate and words of hope and encouragement, sorry for long post.

I hope someone who can help you more comes along soon. He is still your little boy, it doesn't matter what they say about him, he won't change when they diagnose him, he will still be your baby that you love.

I can totally sympathise with your situation. I suspected that there was something different about my ds1 for a long time. My ds2 was three weeks old when they started talking about aspergers and it changed my whole world. All I would say is that all children are different, so try not to worry about the future. I know it's easier said than done, but all I do is try and take one day at a time. Get all the help you can and learn as much as you can about it. We have portage from the county council and the National Autistic Society have a lot of useful help and advise.
I asked the doctor whether my ds2 was more likely to have it as they suspected ds1, and if my memory serves me correctly she said that they might have an increased risk of having it, but not necessarily.
The only other thing I read somewhere, I think it was in an NAS booklet was that "having a child with ASD is like being on a trip to Paris, but you realise that you have ended up in Amsterdam. It's not any better or worse, it's just different.

nicand2 - Sorry I'm not an expert at all, but just wanted to respond and to say hold on to the lovely sentence you wrote - your ds1 is a happy boy, interacts well with others and behaves well - that's brilliant!

Hope you get the support you need and don't have to wait too long for further help with a diagnosis.

Hi and welcome,glad you found us. sorry you are having such a worrying time.the uncertainty is a nightmare i know, but if your son does get a DX at 2 then he will be able to get early input which is so important both for him and for you, there is so much variety in autism and it is impossible to predict how any child with autism will progress, when i look back at my threes early years and then look at them now i am astounded by there progress, when my 3 were DX i thought they would stay how they were then but just get older/bigger how wrong i was.

Thanks for your messages, I'm still sitting here in tears but feel a bit more positive.

I really want to have a positive attitude and throw myself into helping him but I feel so tired at the moment (traumatic c section 11 weeks ago and house move 4 weeks ago!) I will pick myself up eventually I just feel as if I've been floored at the moment.

Everthing makes so much sense now, I just thought he was an active toddler who was a bit slow talking but since last week I've been watching other toddlers and realised what a lack of communication he has.

I agree that it's very difficult to predict what will happen. At 2yrs old ds1 didn't talk and didn't even babble. He'd never pointed. Half the time he didn't even seem to notice whether I was in the same room or not. When I heard that he would probably go to a mainstream school I couldn't for the life of me imagine it. He eventually started using language at around 3ish.

He's now 6.5yrs old and at a mainstream school. He has recently been discharged from the speech therapy list after his latest assessment showed that his language is now ahead of where it should be. He's doing well at school and even has some friends. Each school year has ended with his latest teacher telling the new one "If you'd met him a year ago you wouldn't believe that he was the same boy".

Ds2 does have ASD but it looks as though dd probably doesn't. There are no guarantees when it comes to siblings. Ds2 is now nearly 4 and also doing well. He will be starting at ds1's school in September.

Ah- I was there. 2 weeks after ds2 was born we were told that ds1 was almost certainly autistic (having previously been told he definitely wasn't). He was 2 as well, although not diagnosed until 3.

At 2 he was very passive and very sweet, if I had my time again I wouldn't have stuck with what was provided on the NHS or by the authorities, I would have organised more myself. I wonder whether it would have made more of a difference- probably not.

It's very difficult to answer your questions. DS1 hasn't made the progress we would have hoped - he's 7 now (hence the would have done more myself bit) but we;ve recently been on an excellent course Growing Minds and with help from them we are doing good things at home- and ds1 is doing well with it.

Your DS2 is more likely to have it thank if his sibling didn't. However, ds1 is severely autistic and neither of his brothers are autistic (we did avoid all potential triggers). Both developing completely normally. It's a tricky one not to watch and wonder with younger siblings, but try not to let it spoil his babyhood.

Oh I had a section as well- give yourself time. Remember its a marathon not a sprint as they say.

Hi, My Ds2 is 5 with no diagnosis but a lot of problems with speech and language, social communication and motor skills and sensory integration - in all areas of his life really. It is a real shock when you begin to realise that your child may be different. I just want to say to you to give yourself time. 2 is very young, you can afford to wait a bit while you recover from your section, get used to having 2 children, get used to the new house and the new area. I remember struggling to cope when I first had Ds2 and obviously I wasn't aware that he would have any problems then and Ds1 was developing normally but just having 2 young children is really hard work.

It will get easier to cope with and then you will have more energy to start to think about what you can do to help. I really think you should look after yourself as much as possible and get other people's help wherever you can.

If you do get a diagnosis or possibly before ask your health visitor to look into getting Portage for you. Portage is a home visiting service for children with special needs. Someone comes weekly or two-weekly and plays and works with your child. It can also be a brilliant support service for the parents - my portage worker helped us to get to know the system and just talk things through. Later she referred us to other things like Music Therapy, introduced me at a local special needs group and supported me through choosing schools etc. She even offered to visit schools with me. Sorry things are so bad for you at the moment.

Coppertop - that makes me feel better that there is hope for normal schools, language and friends etc.

I've been thinking about it a lot overnight and I think I am down because my fear is I will never be able to communicate with my lovely boy and do a lot of the nice mummy things. In some ways I wish I didn't know as I don't want a label for him, things feel different even though I know they shouldn't be.

As far as DS2 is concerned I'm desperate for it not to affect his babyhood with me watching his every move.

Hi there

Just wanted to say you are not alone. I came to this board about two months ago concerned my little boy was on the autistic spectrum. He was just coming up to two and not speaking, having lost a few words he could say and has never pointed. He has been very sensitive to change, particularly the arrival of his sister when he was 18 months but apart from that he is a lovely little boy, smiling, happy and more recently interactive. However, he still isn't speaking or showing any signs, tends to play on his own and until about five weeks ago had very little understanding but this has really come on over the christmas holiday. He has seen a paedetrician who thinks he is on the spectrum and we are just waiting for portage sessions to start.

I would say try not to read everything as it will just frighten you and possibly not be relevant to your situation. The most important is to try and just enjoy your son and your new little baby. For weeks I was consumed with fears about what may be and became oblivious to what a wonderful little boy we already have. Now I recognise that he might have difficulties but I love him so much as he is but at the same time will do everything I can to help him along. Lots of people have told me here that the doctors will not diagnose easily and I totally understand your fears - we have exactly the same ones and have been pushing for every type of support we can get. I would say do post here as I found everyone so very welcoming and supportive.

Congratulations on the birth of your new baby.

Thank you Socci and runikka for your words of encouragement. i really apprecciate you taking the time to post as it's all providing a lot of comfort at the moment.

I am getting over the shock a bit more now and calming down a bit. Strangely he did say mummy for the first time yesterday and has been extremely affectionate today so maybe he understands more than I gave him credit for.

Two and a half years ago I approached my GP to see whether there was a reason why DS (aged 2 and a half) was so late in using language. He had about three words! We were sent to a Paed who suggested that there were potentially some problems, possibly autistic, but focus straight away on Speech and Langauge. We were put on the waiting list for NHS S and L help (a year to wait). We decided to go privately and had a very pleasant woman come to our house to work with Robin. I remember turning to her and saying, I just want to know that he will have friends and that he will eventually be able to communicate. She paused for a very long time and then said...'It will be hard!'! I was devasted. Two and a half years late, DS now just 5, he is using more words all the time and he has made many friends. He sounds very like your little one. He was always very happy and very loving to people he knew well. He didn't point and he didn't understand instructions. His teachers loved him in pre-school and the same has happened again now he has started in proper school! IT GETS BETTER! Take one step at a time. I would say, saying Mummy for the first time is a fantastic step! GOOD LUCK!

nicand2, my DS3 (aged 2 1/2) has been referred to the Complex Communications clinic for assessment, but I am fairly sure he is somewhere on the autistic spectrum.

Please try not to worry too much, and try not to fret too much about the future. Even if he does get an autistic spectrum diagnosis, it is simply not possible to predict how he will develop in the years to come. My DS1 was dx'd with high-functioning autism when he was 3 1/2 but he is managing in mainstream school now with only minimal additional support, and is doing very well academically.

Do keep posting on here, I find it a lifeline.

Hi, another mom here who felt like you did, 18 months ago. Believe it or not people tried to downplay my fears, with comments like "what worries you about the diagnosis"? etc, uh, EVERYTHING! ITS SCARY.

Now 18 months on, i have come so far from the day my boy was diagnosed that I cant even begin to tell you. I had that "sick" feeling in my stomach, life looked bleak for my little boy, i had no one to talk to, you know the drill.

But then i discovered the internet, and realised that there are so many people who felt like i did then, and do now, by the way.

Your first priority of course, will be to make sure you are healthy. Your boy is still very young, you must have been on the ball getting him assessed so quick. Thats one step that you have surpassed many others on.

Can i tell you how i overcame the anguish and fear of 18 months ago? I read, i read everything, i talk with people all over the world, i have made friends with people all over the world too, using telephone conferences and email. I have even visited someone I met, in the U.S.! at a DAN conference.

2nd priority, if you dont mind my unsolicitied advise is

-realise that no one is going to help you unless you specifically ask and sometimes DEMAND what you want. Be logical, be clear and dont take no for an answer. I dont know what area you live in, but where I live, it has been a fight from day one with letters, faxes, phone calls and meetings just to get OT and SLT. Whether or not you think your child needs these services, be sure to ask for them, ALL OF THEM. find out from other parents in the area, what they get for their children and demand the same if not more.

Start thinking about getting your child statemented once he turns 2. Without a statement (a legal document) you will be bereft of the legal entitlements to appropriate services at school. You can request your child be statemented yourself, you dont have to h ave your child in school to do this, and you dont need a teacher to do it.

If your child gets a full dx, have you thought about the behavioural interventions like ABA or the medical interventions like biomed??

Lots to ponder. Our boy compared to age 2.5 when he was dx'ed and now, is a totally different boy. He did not talk, he would sit on his own for hours if left to his own self. Now he has increasing language skills, has about 400 words and can play with children. His physical body is much better too. We found specialists treating autism who have helped with the sweating, the constipation, the bronchial problems and what not.

Too much information here, but believe it or not, once you get through what ever you have to get through, it gets much easier. Read stories of hope, plenty of books actually written by parents AND their children about autism. Dont listen to doom and gloomeres like i did at the start. Keep positive, your child is still a baby and has so far to go. YOu can help him, in fact you will probably be the only person who really REALLY helps him. Be your childs advocate and dont take anything as gospel that the doctors or any one else tells you. Scrutinise everything you are told until you are sure it makes sense. Ask for evidence, ask for research.

any more info, glad to help.

for helpful uk sites on biomedical interventions for autism here is link to the very helfpul yahoo group:

health.groups.yahoo.com/group/Autism-Biomedical-Europe/

For treating autism biomedically, go to www.treatingautism.com

another site I have found recently is www.autismweb.com

or

www.autismmessageboard.com

so many to choose from and helpful people.

dont discount what the americans have to say, they are way ahead of us in many ways in terms of rights, entitlements and interventions.

Hi Nic, sorry i havent read everything, so i am sorry if i repeat anything! Autism is on a spectrum for a very good reason, in that one autistic child can be very different from another. I have worked with children on all 'places' on the spectrum (sorry i know that is not the correct word but just cant think of another one!!) And the main thing to hold onto is that he is your boy, you will always know him better than anybody else, so never believe anybody who says, 'he wont do this', because anything can happen!

Just be there for him and make sure there is someone there for you and your partner. sometimes you will feel very confused, and very lost, sometimes you will laugh and laugh at something he says or does, and sometimes you will be so frustrated, but ask any parent of a child with or with out SN and they will say the same!!

Where abouts have you moved to? i am sure there will be other MNetters around you.