comparing DS2 - though I know I shouldn't

[sphil]

Feel quite depressed this evening. I met a woman on a course last month whose son was dx with ASD at the same time as DS2. They are the same age and from our discussions seemed quite similar. We arranged to meet up, partly so I could tell her about BIBIC and partly so our sons could meet - I had some absurd idea that DS2 might take more notice of another autistic child.

Anyway they came round today and I couldn't help comparing the two boys. Her son came in and settled down with toys straightaway. He constructed a track, played with trains and cars and occasionally brought a book or a toy over to show his Mum. She'd told me he was non-verbal but he said quite a lot including 'ball...play...
catch' at one point. DS2 wandered around the room aimlessly,ignoring all the toys as usual, stimming a bit and climbing on my lap from time to time to rub his face all over mine. The only thing he said was 'bye-bye' (as soon as they arrived and at intervals thereafter...)

I realise that I'm sounding like a horrible competitive mum, but I'm really not. It's just that it's gradually dawning on me that DS2's ASD may not be as mild as we think. We've always naively assumed he was on the mild end of the spectrum because he's an easy, placid child. He doesn't have any huge fears or obsessions, or any rigid routines or rituals. But I'm starting to wonder whether the reason that many autistic children have mood swings is because they are HF and it's a result of frustration. This boy who visited us today threw a huge wobbly when it was time to go - DS2 would have just stood up and walked out without a backward glance. Maybe he understands and interacts so little that things just don't bother him.

I feel really disloyal to DS2 writing this. He is such a lovely, happy little boy. But I suppose I've coped with his dx up to now by thinking to myself 'Well, he's obviously on the mild end of the spectrum'. People we meet on a day to day basis are always saying it too - simply because he doesn't display a lot of 'stereotypical' autistic behaviours. And today has just brought me up with a jolt. I wonder whether his passive, under-responsive nature is actually going to be a much harder nut to crack than that of a more volatile, sensitive child.

Just off loading really!

Sphil,so sorry you are feeling down.You're not being disloyal at all,you sound like a wonderfully sensitive and thoughtful mother and I think it is really good to have a sort of neutral space like MN where you can articulate stuff freely in a way you might not wish to in RL.

As mothers,we will always compare our children.It can't be helped,it's human nature.
I am the mother of a 5 year old language disordered girl and am also a speech and lang. therapist.
I work with many autistic people and have to say that I have found no pattern or connection re ability and frustration/aggression.
I have seen some very able passive children and some less able ones with quite severe challenging behaviour.
In general frustration seems to arise because the autistic child doesn't have the same perspective on the world and its working as non autistic people around him!!

How old is your little boy?
Generally I find that the prognosis is generally much sunnier when parents are honest about needs,form links with other groups/parents and avail themselves of what is on offer such as courses,although of course,they may not agree with it all.
What I mean is don't hide yourself away,get out there,get talking,get sharing,in short all the things you are doing.

Believe me,when I tell you that some people would give anything to have an 'easy placid' child. It may on occasion be a challenge to engage him,but it also means that things like holidays,flights and trips tp the cinema will be features of your life,things which are impossible dreams to others.

I know it's hard,I really do.
Wishing you strength and hope to be strong and brave for your son. Things are changing very very fast in the world of Autism.There are lots of hopeful and exciting possibilities on your horizon.

XXXX

hello sphill
my son also has ASD and i know you will understand as i can understand you, ds goes to a special school only take children with ASD and when it comes to parents evening,assemblys,and other meetups i come home with my heart in bits comparing how ds is not able to do things the others can i also had 1 friend i met through earlybird by the national autistic society and she said her son had about 5 words when we met up i was shocked as he was talking S**T loads i was so upset and hurt.
it is completely normal to have feelings like this as its showing what a loving mother you are as you are concerned about how your ds is developing in some areas more than other areas.

ds is nearly 5 got diagnosed 1 1/2 years ago along the journey i have found that you dont get 2 ASD children the same they all veary with there needs, strengths and weaknesss e.g 1 friend came round and said her son who is in my sons class has started writing the alphabet and numbers i was so cut up thinking my god ds isnt doing that now but when she came into kitchen was shocked as my ds has his pictures put up on kithen walls and they are very good he has done a body eyes arms legs and hair im sure hes going to be an artist!!! Anyway my friend was she said her ds cannot draw at all i thought well thats evened up the score there then!! didnt feel as bad as my ds can do something better than hers

so allthough that boy played you havent got as much stress with the ridgity of routine (like us) your ds will be able to handle change more witch i have to say is a blessing for you.

dont get thinking just because he isnt interacting and seems very placid things arent going on!!
he may have ASD but he is listening,watching and observing every little thing thats happening dont underestamate him belive me soon he will shock you, when ds was 4 i would say he had about 50 words if that but he watchs every thing we ereally underrestamated him he still cant talk much but he is a little bright spark!!!
sorry for rambling hope some of it helps

My boy is 10 next month and is right on the borderline with suspected aspergers. I knew from the age of about 1 that he was different but could not put my finger on it.He reached all his milestones. He was placid, no terrible two's etc., and it was as he got older i noticed he was struggling with the social side of things. Last year i had him assessed, and explained to him that he has a different way of seeing things from other people. Before this we had lots of frustration at school because he would say or do things that other kids didnt understand and he didnt understand their reaction. Now he knows his condition he can accept that things are not always as he sees them. He is much happier and i had his school report today which was excellent. This may sound terrible, but i have not as yet mentioned to school that we have a prelim. diagnosis of borderline aspergers because he is doing so well and i feel, being such a sensitive boy, and coping, with our support, there is no reason to rock the boat. I know we are lucky and it could have been a bigger problem, but his condition is what makes him the eccentric little professor who can invent all sorts of wierd and wonderful things, but cannot remember where the shoe cupboard is every morning. If your child is borderline, i think you need to give lots of reassurance that he is just different. My son has had the occasional comment about being odd from other kids, but most kids love him and most adults notice nothing except eccentricity. That is all i can call it. He is very funny, he is famous for telling the worst jokes in our circles. Most of them he makes up himself and make absolutely no sense whatsoever, and he can waffle for England, to the point where i can now listen to him in one ear and eastenders in the other. We have the odd time when things get on top of him, but all it takes is a little bit of explaining and time. Hope this helps. Not sure how old your son is but if you let me know, i will try to think back to specific traits my boy had at the same age.

Sphil, couldn't leave this without posting to say sorry you're feeling this way at the moment...I know it's tricky with the comparison-type of thing.

When DS2 was dx, I met up with another family who had a nonverbal asd son....who could say "eddy eddy go"...It took me ages to understand he was still nonverbal (and I think part of me felt jealous - their son could speak!!). And he could do jigsaws...
A year later, my DS2 is naming things, and saying sounds for hello, bye-bye, but can't yet use language and doesn't speak clearly (I understand a lot of what he "says", DH doesn't).
And I get so proud, think he's a genius(!), then meet another child at the SN nursery who's coming out with clear sentences that mean something - and I worry about DS2 again!
I really think with ASD, it helps to look very hard at how our children were 12 months ago (rather than last month), progress is slower, but you can usually find some!!
I know it sounds a bit daft but I started a notebook 4 months ago, and write in it anything that DS2 manages (eg 2 bedtimes with no headbanging) that he finds difficult. It helps me realise what progress he's making.
And my DS2 finds it difficult to sit still, is constantly touring the room, exploring, naming things...and I worry about how easily he'll co-operate in a more formal learning environment, will he let people direct him, learn etc etc.

I also firmly believe that there's a lot more "in" my son than we get from him, and just because your DS2 is more passive doesn't mean that he's not experiencing the emotions/pleasure etc, just that he's got difficulties expressing himself! Which time (and support) will help with.
Oops, have waffled too much, but hope some of this helps!.

I think it can be very hard to get an accurate picture of another child's strengths/weaknesses. It's also very difficult not to compare IME.

My 2 boys are in some ways complete opposites. Ds1 is passive and has spent a lot of time watching the world go by. When he was younger it was almost impossible to interact with him as half the time he didn't even seem to realise I was even in the room with him. Ds2 is far more volatile yet compared to ds1 at the same age he is much more sociable. He is a lot like your friend's ds in your description of him. The strange thing is that even though his interaction is much better than ds1's was I often think that in some ways ds1 is probably less affested by his ASD than ds2 is. Ds2 just seems to be better at hiding it.

Over the past couple of years ds1 has moved further along the spectrum and his ASD is now much milder than it used to be. I have no idea what will happen with ds2.

I'm sorry you're having a difficult time of it. Offloading on here is a great release IMHO. :)

What lovely messages - you've all made me feel so much better! Want to reply in more detail but am supposed to be helping Dh with bath time (and hairwashing )- will come on here again later.

Back again!

Mizmiz - thanks for the reassurance. It means a lot from someone who's a mother and a SALT. DS2 is 3.5 and has a language disorder (prob verbal dyspraxia) as well as autism. You're absolutely right - I know how lucky we are to be able to take him out without any problems. Most of the time I find working with him very exciting, and I really believe that he's teaching us a lot about different ways of communicating and seeing the world. It's just like Tobysmum says - I was going along feeling very proud of the progress he's making at the moment and then yesterday made me realise just how far behind he is.

Socci - I really know what you mean about it being hard to know how much potential a more passive child has. I could see the potential of the other boy clearly - he was so much easier to engage because he was interested in toys. But when I think about it, DS2 IS interested in stuff - songs, books, videos, physical games. His concentration, engagement and attention are great when he's doing something he's comfortable with and enjoys. And in fact I've realised while writing this that, apart from watching videos, all the things he enjoys are two-way, which is a positive thing, surely? It's only when he's left to his own devices that he wanders and stims. I just need to find a way to take the rapt attention and interaction he gives me when we're singing or reading or jumping on the bed and extend it into other things. Any ideas, from anyone, would be most welcome!
That quote from 'George and Sam' is interesting. I haven't read the book yet, but I did follow her column in the Guardian. The thing is, it's hard to teach DS2 some new things, but not others. For example, he's picked up the Mr Tongue speech therapy exercises really quickly, despite his speech difficulties, because I introduce them and end them with a song. But if I try to teach him something he's not motivated by, there's no chance.

Redbull and Tobysmum - I think you're right about him observing and taking things in. A number of times I've been shocked by things he's done which shows he has understood adult conversation. He varies so much - some days he seems very alert and 'with it' and others he's much more shut down. Strangely enough, he's more alert on the days he's had less sleep and vice versa! I do the diary thing too - and I agree, reading back over it does make me realise how far he's come. 18 months ago he wasn't even responding to his name and now he'll come from another room when I call him. I even wrote down all the things he said in one day last week, and was surprised how much there was. I guess I just need to compare him to himself and not to others. Our paed advised that - but it's hard sometimes!

Teddyedwards - your son sounds more like my older son. He doesn't have any dx but has some dyspraxic traits and at times, some AS traits too. He spends most of his time inventing weird and wonderful machines, telling jokes that don't make sense, making up words for things and can waffle for England! But he's happy, doing well at school, has friends and so we're not pursuing a dx at present. It may be that we'll need to in time, but we'll see. DS2 is much more 'disabled' by his condition in that he's almost totally reliant on an adult to help him to engage in life in general. What was your son like at 3.5?

Coppertop - I'm always reassured by your posts about your DS1! I remember somewhere you wrote that his brain 'rewired itself' at about 3.5 - and (despite yesterday's downer) I do feel that we're experiencing something similar with DS2 - he suddenly seems to have realised that he can affect what happens by what he does, if that makes sense. It's most obvious with language - he's starting to be able to ask for things - but we can see it with actions too. It's as if he is starting to see himself as a separate person, with power. It's probably the biggest change in him we've seen since he was 2.

Phew - have beaten all of you on waffle and ramble hands down! Has been very therapeutic though - feel SO much better. Thank you all again - MN is wonderful!

xx

Back again!

Mizmiz - thanks for the reassurance. It means a lot from someone who's a mother and a SALT. DS2 is 3.5 and has a language disorder (prob verbal dyspraxia) as well as autism. You're absolutely right - I know how lucky we are to be able to take him out without any problems. Most of the time I find working with him very exciting, and I really believe that he's teaching us a lot about different ways of communicating and seeing the world. It's just like Tobysmum says - I was going along feeling very proud of the progress he's making at the moment and then yesterday made me realise just how far behind he is.

Socci - I really know what you mean about it being hard to know how much potential a more passive child has. I could see the potential of the other boy clearly - he was so much easier to engage because he was interested in toys. But when I think about it, DS2 IS interested in stuff - songs, books, videos, physical games. His concentration, engagement and attention are great when he's doing something he's comfortable with and enjoys. And in fact I've realised while writing this that, apart from watching videos, all the things he enjoys are two-way, which is a positive thing, surely? It's only when he's left to his own devices that he wanders and stims. I just need to find a way to take the rapt attention and interaction he gives me when we're singing or reading or jumping on the bed and extend it into other things. Any ideas, from anyone, would be most welcome!
That quote from 'George and Sam' is interesting. I haven't read the book yet, but I did follow her column in the Guardian. The thing is, it's hard to teach DS2 some new things, but not others. For example, he's picked up the Mr Tongue speech therapy exercises really quickly, despite his speech difficulties, because I introduce them and end them with a song. But if I try to teach him something he's not motivated by, there's no chance.

Redbull and Tobysmum - I think you're right about him observing and taking things in. A number of times I've been shocked by things he's done which shows he has understood adult conversation. He varies so much - some days he seems very alert and 'with it' and others he's much more shut down. Strangely enough, he's more alert on the days he's had less sleep and vice versa! I do the diary thing too - and I agree, reading back over it does make me realise how far he's come. 18 months ago he wasn't even responding to his name and now he'll come from another room when I call him. I even wrote down all the things he said in one day last week, and was surprised how much there was. I guess I just need to compare him to himself and not to others. Our paed advised that - but it's hard sometimes!

Teddyedwards - your son sounds more like my older son. He doesn't have any dx but has some dyspraxic traits and at times, some AS traits too. He spends most of his time inventing weird and wonderful machines, telling jokes that don't make sense, making up words for things and can waffle for England! But he's happy, doing well at school, has friends and so we're not pursuing a dx at present. It may be that we'll need to in time, but we'll see. DS2 is much more 'disabled' by his condition in that he's almost totally reliant on an adult to help him to engage in life in general. What was your son like at 3.5?

Coppertop - I'm always reassured by your posts about your DS1! I remember somewhere you wrote that his brain 'rewired itself' at about 3.5 - and (despite yesterday's downer) I do feel that we're experiencing something similar with DS2 - he suddenly seems to have realised that he can affect what happens by what he does, if that makes sense. It's most obvious with language - he's starting to be able to ask for things - but we can see it with actions too. It's as if he is starting to see himself as a separate person, with power. It's probably the biggest change in him we've seen since he was 2.

Phew - have beaten all of you on waffle and ramble hands down! Has been very therapeutic though - feel SO much better. Thank you all again - MN is wonderful!

xx

Whoops - you def don't want to read all that twice

So glad you're feeling better Sphil.
Try not to compare him to others.It will bring you down.
Compare him to himself.
I keep a diary on my dd's progress. Don't write every day,but put things of note down.
It is so uplifiting to read it and to realise that she has done something which didn't seem possible a few months back.
Such a buzz.

Yes,he is teaching you a lot about communication.Be open to it.He is showing you as much as you are showing him.

You talk about 'rapt attention' when reading,singing and bed jumping.
Fantastic!
Is he very physical?
Gross generalization I know but I find a lot of children with comm. problems get a huge amount out of the freedom and lack of pressure that such activities involve. I swim about 3 times a week with my daughter. She adores it.

How about music groups and/or sing&sign groups (which I run at present.)Broadly speaking many people with ASD don't respond so well to signing but you never know unless you try.
I recommend the dvds by Sasha Felix. Go to her website www.singandsign.com where you can read about her and buy them.
I really rate her (she got into this because her dd had lang difficulties too.)

Be brave and positive.That is the best gift of all for your little chap.

XXX

Mizmiz - we've got the Sing and Sign video and the second one on DVD. DS2 loves them! I can honestly say that the vast majority of the words he's learnt (and retained) have been those he's learnt through songs - often ones with signs or actions attached. I often think he'd be fine if the world was a sung place! We tried a Sing and Sign class but the woman running it (though lovely) wasn't quite 'attention grabbing' enough for DS2. We need Sasha! We do use Makathon with him - he understands quite a few signs and occasionally uses some himself. Our current SALT says, like you, that it's more unusual for a child with ASD to respond to Makathon but that he's a 'complex' mixture of ASD and language disorder, so she can see why it works. We are having some success with elementary PECs too - a choices board for snacks -and she is going to start teaching us formally on Friday.

Gosh,it gets better and better!
Strongly recommend you attend the 2 day PECS course. Some of 'my' parents have had it funded by S.Services or even SALT service (billed as a 'communication aid').
If you have had success with it so far,it is really important that you fully understand the premise behind it.
I love PECS, it is the one thing that has excited me the most in my 10 years of work,esp. with children with ASD.

It all sounds massively encouraging (and I promise I am not just saying that) with loads going on at an early age,sussed mother and lots of promising responses.

Blimey Mizmiz, do you have ESP? We've just enrolled on the 2 day PECs course in Brighton in June! Didn't know about possible funding though, so will investigate that. Thanks for your lovely positive comments - the vast majority of the time I am very optimistic about DS2's progress, but then I occasionally question my own confidence and think 'Am I fooling myself?' So it is great to hear that someone else thinks the outlook is good.

Our new SALT is dead keen on PECs too. Unfortunately she's just cancelled tomorrow - tonsilitis . But I'm really looking forward to learning it properly. Funny - I was very resistant to it a year ago (and so was DS2). It seemed to me then that I was giving up on the belief that he would develop normal speech in time. Now I feel completely different (and lo and behold, he's showing willingness too!) Not sure who's influencing who here...

Oh Sphil,that's great.
You will come away feeling you can take on the world. Their training is top notch.
(Even if you do end up paying yourself,you know there is a reduced parents' rate right??)

I know some people are resistant to alternative/augmentative modes of communication but what you have to remember is that your child need a way to communicate with right now,not at some point in the future.
Having no 'voice' is a scary and frustrating thing.

Thus,if the child will develop speech,the augmentative method acts as a bridge to it and has provided them with an interim method of communication. (This is how all salts think.)
If the child will not develop speech,well, he has at his fingertips a system which can be used to communicate quite complex needs and wants.

It's a win win situation.

I have used PECS successfully with verbal and non verbal children,and have seen it really develop and move on the communication skills of many individuals.

(I organised PECS training for a large group of people in my area.There were so many,we had two courses back to back.I was so inspired I sat rapt through both.
That's how inspirational it is!)