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help, i think my 22 month old baby boy has ASD

(30 Posts)
joooly Sat 01-Aug-09 14:38:16

Hi, i'm very new here and need some advice. I dont even know the abreviations to use. I have one son aged 22 months whom i suspect has autism. I did the m-chat and failed on 2 critical and another 3 questions. After a long struggle with my HV and GP (who think i am just anxious) i finally got the referral to have him assessed. It may take a very long time i am told and so wondered if anyone knew how i could go about having this done privately. My time on the internet is very limited as i have a 10 week old daughter too. I do have a few concerns about her as she took quite a while to make eye contact and smile (my son was 12 weeks old before he would look at me) she wont coo or gurgle like other babies i know....anyway to cut a long story short, i am terrified and very stressed. I tried for 12 years to have my babies with lots of heartache and miscarriges along the way. Now i've entered a world which feels very isolated and full of tears. My children haven't been vaccinated as i was sure there was a connection with autism so i know this is not to blame in my case. I think this is the reason the GP thinks me neurotic. I also dont want to come accross ungrateful for having my children, my little boy is a joy and lovely but with me being an older parent (44yrs)i am concerned about his future and who'll care for him. Am i jumping the gun as i haven't has a dx yet? I know there are parents on here with a lot more worry and heart ache than me so please forgive me if i sound selfish. Someone to talk to would be great. Thankyou to anyone who responds.

tryingtobemarypoppins Sat 01-Aug-09 14:47:40

Welcome to mumsnet joooly and sending you big hugs as you are having a tough time. Firstly congratulations on the birth of your daughter. I teach and have taught children with ASD and so worry all the time about my DS, a bit of knowledge can sometimes be a dangerous thing! What are your main concerns about your DS??

bubblagirl Sat 01-Aug-09 14:48:11

firstly dont panic your self so much what leads you to believe your ds is autistic? im not sure as babies if time wise to smile is anything to worry about my ds was smiling from around 8 weeks and has autism i didnt think eye contact in babies was anything to worry about either my ds was a starer really starey but still he has autism and limited eye contact which has improved hugely

all children develop differently nt or sn so it really is hard to say tell me more about your ds behaviour that leads you to think he is autistic

please dont compare children either especially from 10 weeks they all develop at different times try and enjoy your children

bubblagirl Sat 01-Aug-09 14:49:53

sorry if my help seems rubbish im really ill at moment have virus my mind isnt working fully just wanted to send you big hugs and tell you to stop putting pressure on yourself that doesn't need to be there

also have you considered that you may have PND not trying to be patronising but anxiety was huge part for me constant worries of what may or may not happen to my ds

bubblagirl Sat 01-Aug-09 14:50:49

do make sure your baby has her jabs mmr doesnt come till later anyway and needs to have other jabs

tryingtobemarypoppins Sat 01-Aug-09 14:53:04

I have had a look at the m-chat and it seems a good starting point if you do have concerns. Your GP's referal is a good thing, consider this a positive step. How did you feel the m-chat represented your son?

jemmm Sat 01-Aug-09 15:04:31

Hey Jooly - don't worry, nobody I've met here is going to judge you for not knowing abbreviations, I'd be suprised if anyone thought you were ungrateful and as for being 44 - I'm 40, so they've me (and a fair few others) to answer on that one.

Right now - don't worry about your little girl - waaaaaay too early, and you've enough on your plate.

Tell us a little more about yuor little boy though - what's he failing on the CHAT? Why were you concerned enough to do it in the first place? Any language? Does he point at things and if you point at something does he follow your finger?

J

Nyrrem Sat 01-Aug-09 15:24:27

Hi Joooly

I'm interested in M-CHAT, I had only come across CHAT before your post. There are a few of us on here with babies who wonder about ASD because of our older children. There was a thread a week or two ago which seemed to show similarities, but I think it's pretty hard to be sure with children under a year. The thread is here:
www.mumsnet.com/Talk/special_needs/793978-Signs-of-ASD-in-babies
Our paed won't even give our ds a diagnosis until he's 7 (now 4.7).

I don't know about the private route, but I think I've seen discussions on here recommending people, so with a bit of luck someone will come back to you. TryingtobeMP is right getting a referral from your GP is a positive step.

HTH Nyrrem

joooly Sat 01-Aug-09 15:24:44

I dont really know where to start. Here goes. After the baby eye contact stuff i quickly got over my fears and all seemed well. A few months back he started playing with trains and cars all the time and lining them up, driving them round the furniture and crashing them. Always seems to play in the same way. anyway, i goggled it and yes, autism crept up again. Then i started paying attention to other things, not pointing, waving bye bye or drawing my attention to anything. I still feed him though he can do this himself, he makes no attempt to undress and struggles to get his shoes off. The main thing though is he doesnt use the words that i know he has to communicate. He will say a phrase he has learned like...i ask "what do you want?" he points his finger in the air and say "that" because i taught it to him. He does drag us around the house now to get things he wants but has only started doing that. He doesnt often check to see what i think by looking at me or bring me toys. The only real pretent play i've seen is him chatting on the phone and saying nana then som gobbledegook and bye.We were in a farm park the other day and off he went without looking back for me, not once did he turn to see where i was and he went a fair distance, i was tagging him though and finally had to go and get him. I'm trying to kinda summarise,my main worries are no pointing and bringing things of interest. Playing with his trains for hours on end if allowed. His speech is quite poor but is getting better, i can hear him name all the trains he is playing with and he repeats OH no and Oh dear then crash which i know he gets from watching thomas the tank engine.. On the positive side, I have started writng down spontaneous speech and he actually says more than i thought. He seems to like other kids though we dont really see a lot. He'll play peek by putting his hands over my eyes then lifting them off ask for a kiss and hug. He waves bye to people now in the last few months and mostly gives hugs too. He has some strange reactions though to people in supermarkets, either completely blanks them or frowns and looks away if they speak to him. Once we met his papa and he really seemed to be embarrassed and hid his head.
I really have went on and on. So, pointing things of interest and bringing them to me, checking to see if i am watching and playing with the trains all the time are the main issues. I feel like he just doesnt get it? I know that probably sounds strange. My baby is awake so i have to seeto her. Oh, my husband works away 2 weeks at a time so i can get on here more when he is home. He thinks he's borderline but will get better, my mum thinks he's fine.
A really big thankyou for your response, i burst into tears. x

joooly Sat 01-Aug-09 15:36:56

hi, he follows if i point but he doesnt point out anything. m-chat failure was 7 and 9 critical also 6 and 19. he doesnt always respond to his name or when clled, usually engrossed in trains or watching tv, at other times he seems fin.sorry, feedin DD.

tryingtobemarypoppins Sat 01-Aug-09 15:41:18

Oh joooly I really feel for you. You must be exhusted with a new baby as well. To be honest, your DS behaviour sounds very alike many 20 month olds. The trouble is they are all so different and the ASD range is huge! In reality I think we are all on it somewhere.

My DS is 20 months and he plays endlessly with plugs and turning things on and off. This sort of repetative behaviour is common I believe.

"He doesnt often check to see what i think by looking at me or bring me toys." This may well be because at 20 months they are becoming more indpendant and simply don't care what you think!

"We were in a farm park the other day and off he went without looking back for me, not once did he turn to see where i was and he went a fair distance." Totally normal! My DS would take himself off round the whole farm if we let him!

His playing on the phone is a really good sign.

I know its tough with a new born but perhaps one thing you could do is have some special time with him working on role playing etc.

Does he go to nursery? If not perhaps one day or two mornings a week may really help you. A good children's centre with lots of agencies attached would be ideal as they can access may other people to observe his play etc. For example I was a bit worried about my DS speech. His key worker asked a S&L team working in the same building to pop over and give some ideas for increasing his langauge. This was great because it also meant that in that one afternoon I was reasured he was fine.

It is so hard all this parenting! We all want our little ones to be perfect and worry about them all the time. Your doing a fab job and need to cut yourself some slack!

tryingtobemarypoppins Sat 01-Aug-09 15:42:31

It may also be worth having his hearing tested. Your HV will organsie this for you xx

joooly Sat 01-Aug-09 15:55:48

thanks marypoppins , no, he doesn't go to nursery, that was my job, i cant bring myself to leave him, he lets other kids take things from him and runs away if he thinks he's about to be hit, he never uses the "mine" word either. its very sad to watch.

tryingtobemarypoppins Sat 01-Aug-09 16:01:35

I know where your coming from but perhaps consider nursery as a way of learning these social skills and developing his independancy. I am so greatful for the one day my DS spends at nursery. He has come on so much. We went to parents evening last week and they have made a photo album of his journey there. It was lovely to see him sitting in the corn flower tray, making new friends, cooking, painting etc all those things which you can do at home but are hard with a new born and you do need other toddlers around to help develop those social skills. Consider it, I would give you a break too and extra support for him too if you choose the right setting.

flyingmum Sat 01-Aug-09 16:08:39

Hi

You poor thing. I think you are worrying yourself into a frazzle. Reading it I would say yes there are some autie things on there BUT ALL CHILDREN DO THOSE THINGS. For example, my eldest (who has autism amongst other stuff) never ever ever lined anything up and although enjoyed Thomas wasn't obsessive about it. My youngest who doesn't have anything (apart from naughtiness and cheek grin) lined up trains, carried his Thomas engines about with him and played Bob the builder and cars till blue in the face. My eldest made eye contact and still does but does it on his own terms. He smiled at bang on 6 weeks and hit all his mile stones.

As someone has mentioned ASD is HUGE. It is a landscape of difficulty and everyone has their own indvidual landscape with different hills/valleys/etc. A lot of very young children do fit in with the autistic type spectrum because that is how toddlers survive - self obsessed, interested in their own stuff, lots of repetition to learn etc etc.

The only alarm bell for me that is the same with my eldest at the same age is the leading you to things he wants rather than saying the word. This can also be indicative of Speech and language disorder or another communication disorder and might not be full blown autism although they all have shades of grey there.

What to do: Lots and lots of over the top imaginative play. Make it silly, pretend you are jumping over waves in your living room or that your bed can fly and that you are seeing polar bears and flying round the world. Rig up a tent with old sheets and backs of chairs. Do lots of pretend play with playdoh and saucepans, cups, washing up etc etc - link it in with what you do in the kitchen so if he doesn't have a huge imagination then he can link it to something. Just talk all the bloody time to him and one day, I promise you, you will wonder why he won't shut up and you will be writing on here that your son never stops talking and how to you get him to stop (it's own set of problems believe me).

Don't worry AT ALL about the baby. Enjoy her. If they've got difficulties well they've got them. Its a mountain we wish we didn't have to have but at least its an understandable mountain and one that has been climbed by many people. Your little boy sounds lovely and a helluva lot like many other almost two year olds. However, if you have a hunch then you are right to go with it because the earlier you get therapy and help the better. He is wanting to communicate with you and is reacting to the world he is living in which is good.

I wish I could have met my 14 year old when I was going through this when he was 3. He is the nicest child on the face of the universe and yes we sometimes cling to the mountain face but HFA is not the worse thing in the world.

sickofsocalledexperts Sat 01-Aug-09 17:47:59

I would agree with the other posters - there are some things that sound autistic but others that don't (eg if he is imitating episodes of Thomas, then imitation is often a deficit with autistic children, so that's a good sign). At this early age you can start to drag words out of him so he learns that talking gets him good results - eg wait to push a swing, prompt him to say "push" then give him a big excited push when he says it. Do this with everything, I know it will drive you mad but it will start to spark off more speech centres in his developing brain. Dr Daphne Keen can give a private diagnosis but it does cost - she is online I think. Good luck!

mysonben Sat 01-Aug-09 19:13:49

Welcome to MN.
I would say try not to panic ,i know it is easier said than done wink.
Wait for the referal before getting to a conclusion, in the meantime i would write down a list of the things that do worry you about your ds, this will help you to get your point across without forgeting anything.
There are many red flags for autism in young children and babies, but the spectrum is so vast and they do not display all the same symptoms in the same way,... check out the "national autistic society" they have really good advice and info.
You are absolutely right to ask for a referal if you have concerns, ignore what the GP or HV are saying, they are often not experienced enough in asd (my HV missed the red flags for my ds, he is 3.9y and mild asd).
Don't worry about your baby, she is far too young to make any assumptions, just enjoy these early months.

vjg13 Sat 01-Aug-09 19:38:10

Joooly, please don't be offended by this but do you think you may be depressed?

You have waited ages for these children and now having 2 so close together especially with your husband being away a lot is bound to be difficult.

I think some nursery sessions would really help you and your son. Just a couple of mornings now he is a bit older would let him interact with other kids and give you a break. The staff at a good nursery will tell you if they feel he has any developmental problems and this may reassure you too. Toddlers do play by handing each other things and he probably isn't running away because he is 'about to be hit' but just playing.

lingle Sat 01-Aug-09 20:55:51

Hi Joooly, I am lingle, I am mum to DS1 (6.5) and DS2(3.11). Both have/have had very bad language delay with other behaviours some of which are/were the same as your son's. Both are doing wonderfully now though DS2 still has lots of catching up to do.

I am so impressed that you are so on top of these issues as early as 22 months whilst looking after your younger child also. I certainly wasn't. Please try not to feel bad about yourself or your son. I love "train" boys aged 1 and would love to meet him.

Getting a diagnosis is not the starting point for helping your son - it is a possible step (that you might not need to take)along the way. So you are absolutely not jumping the gun in terms of thinking about how you and your husband will help him, even though I doubt you'd get a diagnosis at 22 months with a boy showing such good skills. To handle your husband and mum, can you say "yes, he'll be fine but only with our help" or something like that? Something to meet them halfway and get them motivated?

Do you feel you are over the post-natal period yet? I've made the mistake of bombarding people with tips and book recommendations in the past when the reality was that they were too sleep-deprived/anxious/post natal to take any of it in.......blush....I'm like an annoying friend who turns up for coffee and won't leave your house once I get on to the subject of ways to help our kids....blush again

mumslife Sat 01-Aug-09 21:18:53

Message withdrawn at poster's request.

joooly Sat 01-Aug-09 22:48:16

thankyou everyone for all your advice and tips.I feel a little stronger feelings go up and down everyday, lots of tears but i feel better for having found all of you. I hope i can be a help to someone one day. I'll keep posting here when things change, i might even look into nursery for a couple of hours and try not to feel guilty. xx

sadminster Sun 02-Aug-09 08:29:22

joooly I'm in a similar position - 2.9yo with language delay & possible ASD (my son would fail the M-CHAT with 1 critical & 2 or 3 other fails) & a 2 month old baby. I am tearing my hair out with anxiety & it has tipped me over into PND.

Just wanted to say that you're not alone.

jemmm Sun 02-Aug-09 08:46:02

You're definitely not alone Jooly...

My son (one of a twin) - 2.2yo diagnosis of classic autism, about 4 months ago now.

The one thing everyone says is the earlier you start intervening the better. I know there are things on the M-CHAT that DS would have failed 6 months ago. He's improved so much, because we've had some pretty basic help and advice from a few professionals, and we've done some reading on here and elsewhere.

This week I've been close to tears 3 times, due to silly little (but huge step for us) things he's done.

tryingtobemarypoppins Sun 02-Aug-09 10:16:13

Thats great news joooly and don't feel guilty! Keep us posted!

joooly Sun 02-Aug-09 17:31:27

Thankyou sadminster and jemmm, if you ever want to talk.... I'm not sure if i have depression though my HV seems to think so. The anxiety manifests in me by serious mood changes, some days i feel i can cope with whatever ds has then other days are just filled with tears and thoughts of wishing i wasn,t here anymore, not that i could ever do anything as i have the both of them to look after. My fear today is for dd, i find myself staring at her all the time and asking everyone if she is looking at them and smiling. She still doesn't coo and ds never did. I describe my state as having a very black cloud hanging over me, i want to scream and tear my hair out and then stop and look at my son and think, wow, how much i love him just the way he is. I think i can get carried away with thoughts about now and the future.
I must say again that having found everyone on here has helped me greatly, just knowing there are people who understand and have come through it, well, i'm just amazed at all their positivity.
Something very cheery for me, i'm going out to dinner for the first in a long time, cant wait!

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