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Is this Autism? What can we do?

(12 Posts)
guyshahar Wed 15-Jun-11 11:06:33

Hello

We are very worried about our 22 month old son, Daniel. He is showing signs of what we fear might be autism. Please find below a description of his symptoms, and links to some short videos of him in various situations that we took this weekend.

Does anybody have any insight into what this could be, and what we might be able to do about it? We have heard that Cranio-sacral osteopathy has been helpful to some children. Does anybody have any experience of this, or know a practitioner who has really helped in a similar situation? We are also hearing about various miracle-clinics in different parts of the world which claim to have a great success rate in curing autism. Does anybody have any thoughts about these? Or any other ideas for what we could do?

Here is a little background:

Speaking/Understanding - No real words yet. Seems to understand "bye" better than any other word. Can repeat "no" (without seeming to understand its meaning) and a few other sounds, and has a range of animal noises. But has not picked up any words. More worryingly, he doesn't seem to understand simple instructions, or even his name. Several months ago, he showed signs of understanding some simple things like "open", "close", "round and round", etc. Now when he does pick up a sound, he doesn't seem interested in repeating it and learning it.

Communication -
Relationships with Others - He used to be so interested in other people, for example doing everything to get their attention in public and we were unable to distract him. Now, he shows no interest in them, even when they are very interested in him. He used to be interested in other children, but now either ignores them, or even seem frightened or numb/frozen if they come too close to him.
Relationships with Parents - He used to be happy to look us in the eye and smile, but this rarely happens now, unless, occasionally, it is part of a game he decides he wants to play. Still likes to play peek-a-boo, but perhaps he is interacting with the game rather than with the person playing with him (see videos of him playing with no eye-contact). He rarely looks to us to play any more, though he does like to be near us - if he is playing alone in a room, and we move to another room, he will bring his toys and start playing there. In the evenings, he is often more animated, and sometimes even takes our hands to put us in the same place, and is more playful. He doesn't often like to be held, but can relax on our arm, and goes to sleep on our shoulder during the day. He rarely points, and when he does, it is to show us what he wants, rather than to share something with us. He can come alive when new people visit the house, getting everyone to sit on the sofa and "performing" happily to them for a while (see video). Sometimes he does this with us as well, but more often does not connect and even seems uncomfortable hearing his name (no reaction at all, and more determined passivity, see videos below).

Interest - It is as if he has lost interest in everything in recent months - communication, games, etc. It is as if something has been "switched off". His eyes used to shine all the time - now it is only occasionally, when he is in a mood to play like before. He also seems to have less energy than before, and rather than endless play, he lies on his tummy on the floor quite a lot of the time - sometimes doing nothing, sometimes rolling his favourite cars backwards and forwards..

Sleep - Never easy for him, but not so bad now. Slept easily for first week, but after that, took a lot of work to help him to sleep.

Eating - Has always eaten well, but not really been interested enough to stop what he is doing and eat. Sometimes we manage to feed him while he's doing other things, but more often, is it only in front his favourite cartoons that he will eat. Started being interested in what we were eating at around 4 months, and started chewing and swallowing small pieces of solid food at around 10 months, but lost this interest/ability at around 16 months. Now, sometimes chews and then let's it fall out of his mouth. Only really swallows pureed food, and often rejects a mouthful if there is a piece of solid food in it. He has always had a very healthy diet of fresh fruits, vegetables, grains, pulses and dairy, with no salt or sugar or preservatives.

Walking - Started crawling at around 7 months and walking at around 1 year. Running from around 15-16 months.

Other - Fairly often, he holds his head behind his ears, especially his right ear. Recently, he has started getting more easily frustrated with his toys, and can sometimes hit his own head or face when very frustrated (though not very hard). When on holiday in India in December, he had a big bang to the back of his head. His reaction to this was minor, but it was after this that the symptoms started to appear more strongly.

Birth - Slightly early (2.5 weeks), waters broke and contractions began, but not enough dilation after 2 and a half days. Induced with a syntocinon drip. Labour was 11 hours, and he came out face up rather than face down.

Here are the videos. The last one is a few weeks old, but still typical. The rest were all taken between Saturday and Monday this week. We have not been able to capture an example of every type of behaviour mentioned above, but they do show him in a range of situations:

1 - Not responding to name (but interacting briefly with his grandmother) - https://docs.google.com/leaf?id=0B1CfV9iJChZMZTVlYTk0ZTYtMzcwMy00YTVhLThkM2UtMzFlMGZkMTg2NWE3&sort=name&layout=list&num=50

2 - Playing without eye-contact - https://docs.google.com/leaf?id=0B1CfV9iJChZMOGJjMGQyYzYtNzRjYS00NTU1LTk5MzctNjI2NDliYzA1YTQ2&sort=name&layout=list&num=50

3 - More interactive- https://docs.google.com/leaf?id=0B1CfV9iJChZMZGU1Y2NkNmUtZGE4ZC00ZDNiLTg2NGYtZWEwYmYzNWNmY2I4&sort=name&layout=list&num=50

4 - Very distressed and unable to sleep after frustration with toy - https://docs.google.com/leaf?id=0B1CfV9iJChZMOWEwOWZiM2MtYmNjNC00NGI2LTg4OGItNDk0MWYxNmE4ZGU0&sort=name&layout=list&num=50

5 - Morning Play - https://docs.google.com/leaf?id=0B1CfV9iJChZMNDk2ODc0YjYtMGRmNS00YTFiLWI2YTMtZmVmM2JkMjMyNzE5&sort=name&layout=list&num=50

6 - With book, ignoring Mummy - https://docs.google.com/leaf?id=0B1CfV9iJChZMMWEwODIyMTEtYzliNy00MTI4LWI2YjctZGJkYzA5YTc2MWNl&sort=name&layout=list&num=50

7 - Playing with and talking to birds in the park - https://docs.google.com/leaf?id=0B1CfV9iJChZMNDExMDNkMWQtZDA5MC00ZDY0LTg5NWMtMTk3YmI3OTcyOTFl&sort=name&layout=list&num=50

8 - Lying on floor - https://docs.google.com/leaf?id=0B1CfV9iJChZMODNmNGE0YTAtMDNkYi00NTIzLWJjMmQtZDdiZjVjNzg2MWQw&sort=name&layout=list&num=50

9 - More open, with visitors (older video) - https://docs.google.com/leaf?id=0B1CfV9iJChZMMTYwYmIxMjUtYWIxOC00NTM4LTgzMjQtY2JkMDQ1NjAzOTIw&sort=name&layout=list&num=50

We very much look forward to hearing from you.

Best Wishes

Guy & Oksana (Daniel's parents)

Pagwatch Wed 15-Jun-11 11:17:03

I am deeply uncomfortable about your listing symptoms with videos and your Childs name on an open website. I haven't looked at the links - it feels very intrusive.

I would go to your doctor not the Internet tbh.
Have you spoken to your doctor?

Lancelottie Wed 15-Jun-11 11:26:47

Agree with Pagwatch, and haven't looked at the videos. However, have you ruled out the obvious, by getting his hearing checked and asking for a general developmental check with your GP or paediatrician> Do talk to them about the blow to the head as well.

asulikeit Wed 15-Jun-11 11:34:21

I also agree with the two comments above I wont be looking at the videos myself and please do go to a doctor about all of your concerns.

This is an open forum and can be viewed by all and it would be much better to let the professional people deal with it.

IndigoBell Wed 15-Jun-11 11:37:38

Just go to your GP, and tell them your concerns, and ask for a referral to a paed.

Then while you're waiting for a referral keep researching the topic....

If it is Autism nothing medical will be done for you. A dx brings you very little. What you will have to do is research everything and decide what you want to do for him.....

Good luck.

utah Wed 15-Jun-11 11:40:30

I would if I was you speak to your doctor, refer yourself to speech therapy for your son as generally a bit of a wait and go and see HV. my son regressed at 18 months and I got him checked just under 2, but even then it still took a year to have him dx as he was young and does not have classic autism so had no stimming etc. You must be worried but no one can put your mind at ease except professional and even then they will not have the answers straight away. good luck

guyshahar Wed 15-Jun-11 14:05:09

Pagwatch - really sorry, I didn't mean to offend anyone or to make anyone feel uncomfortable. Is there any way I can edit the post to remove the links? I didn't realise there were any issues putting such information on the site - I just thought it would make it easier for someone to help us.

Utah - He has been referred for a hearing and speech test. Hopefully, this will lead to some speech therapy, but it only seems to be addressing a small part of the problem.

IndigoBell - That is a bleak view of the NHS - and it is being bourne out by our treatment so far. We really don't want to wait to go through "the system", as he is 22 months old and it is probably still early enough to do something to help him effectively. But we don't know what. Do you (or anyone) know what sorts of options there are outside the standard NHS route?

chocjunkie Wed 15-Jun-11 14:20:02

haven't looked at your videos either but can see how concerned you are. I can only second what the others have said. go to GP and get him referred to a paed. and get his hearing/ears checked out.

IndigoBell Wed 15-Jun-11 14:26:27

guy - we don't live in the US. The NHS provides fuck all for our kids.

If you're rich you have loads of options. If you're rich and educated / informed you have even more. If you're struggling you have options but they're more limited........

However, loads of us here have done brilliant things with our ASD children.

You have behaviour options like ABA, TEACH, PECS
Dietry options (GF/CF, GAPS, and loads more)
Physical therapies ( Retained Reflex Therapy, Auditory Integration Training, Sensory Integration Training)
SALT
OT
plus other stuff which I don't know about....

Read this board, and start thinking what kid of thing you would like to do / could do........

EllenJaneisnotmyname Wed 15-Jun-11 14:39:11

You aren't offending anyone, Guy. smile It's just that anyone can look at this forum, it's not like Facebook, where people should at least know you. We are just concerned for your own security. Save a copy of your post, report your own post (see the Report button at top RHS and ask for it to be deleted. You can always post again without the names and links, maybe a more anonymous nickname?

What we usually advise on here is that if you have concerns you need to ask for a referral to a developmental paediatrician via your GP or HV if you have a good relationship with her. Don't let them fob you off and suggest waiting a few months to see how it goes. The waiting time for the appointment to come through will be plenty long enough for that.

For what it's worth you do seem to have some valid concerns, but we are just parents on here. We can't diagnose by internet. Let us know how you are doing.

utah Wed 15-Jun-11 14:58:46

You could try to go to some surestart centres as they can have staff who are used to spotting children with disabilites and can lead you onto the path of courses, special needs placements (if this becomes the outcome). If your child does have problems (hope not) then toddler groups for SN children as you will be surprised what you can learn from other mums. If the paed/gp sees a problem you may be lucky enough to get portage. You could look at the peach website (ABA) which is intensive interaction.

Pagwatch Wed 15-Jun-11 15:09:31

Yes. As EllenJane said, I am not offended at all. Just a bit uncomfortable about your sons privacy.
I wouldn't put ds2 videos on here as I think his privacy is important.

Of course you may feel different but I just wanted to explain why I won't look at nor comment upon the videos. smile

The hearing test is not to deal with hearing problems (although of course it may deal with that). It is to exclude a ' straightforward' problem before considering more complex issues like autism. Ds2 had hearing tests very early on to exclude hearing problems before we got involved with developmental issues.

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