Autistic ? Aspergers ? Or not......?

[TheodoresMummy]

I'm not really sure what to write here, but need to talk about this.

Basically, i'm very confused.

DS is 3.6. He's our only child at the moment.

He is currently being seen by our HV (who I like), a speech therapist (who I also like) and a Pead (who we have only seen once, but seemed nice).

I spoke to HV when DS was a little over 2 because I was concerned about his speech and behaviour. His speech was delayed, but is actually quite good now although he doesn't seem to use expressive language. Although I have never felt that DS was severely affected, I have always wondered if he might be on the Autistic spectrum. This might sound completely daft and I am probably just quoting stereotypes, but he does display certain characteristics.

Trouble is, HV and Speech Th both think that there is def something 'not quite right' with DS (their words). However, Pead doesn't seem overly concerned because his behaviour has improved over the last year and a bit. I agree that he has 'grown up' a lot (well he would tho, wouldn't he ?) and is much easier to live with , but i'm not convinced that he is just a very 'spirited' boy and don't want to let him down.

If I list some of my concerns and thoughts here would you perhaps be able to see if any of it sounds familiar to you and your DCs with ASD/Asp ?

• Loves all vehicles and obsessed with their wheels

• Fascinated/obsessed with spinning and others motion

• Fascinated by things going up/down, in/out, fast/slow

• Lines things up

• Groups things

• Counts things

• Has a phenominal memory

• Has started to play imaginatively, but all copied from stories he has heard or things he has been told

• Has only just started to like other children - he has always been aware they are around him, but used to scream and cling to me if they went near him or spoke to him. He started at a wonderful nursery last Sept and has gone from steering well clear of the others to saying hello/goodbye to them and hugging them, but still not playing with.

• He adores all adults. He waves and calls out to anybody, hugs strangers in the street/park if I don't stop him.

• He doesn't like change, but can cope after some repetition

• He is soooooo bossy , orders people arond all the time - he still sees himself as the centre of everyones world

• He is very sensitive, yet has no recognition of others' needs

Ok, I won't go on any longer. Am I just making too much out of normal 3 year old behaviour ? What are the main areas of behaviour/development I should look at if I am wondering about Autism ?

Hope someone can help me feel like I am not a weirdo who wants to see something that's not there....

Thanks aig. It's really useful to hear about real life experiences/examples.

In what way is your DS 'a bit strange' now ?

Ds1 has a dx of HFA. Ds2 has a dx of AS. Ds1 didn't really start using language until he was around 3ish. Ds2 had some words by 2yrs but they were mainly numbers, shapes and colours so not particularly useful to us. Ds2 had much earlier intervention than his brother so it's possible that this might also have skewed things. Although AS is seen by many as being milder than HFA, it's actually ds2 (AS) who is the most difficult to manage.

Coppertop - can I ask in what way he is more difficult to manage ?

When ds2 (AS) feels as though something is 'wrong' he reacts in a very physical way, throwing himself on the ground, headbanging repeatedly, throwing whatever happens to be nearest to him (including chairs). Ds1 (HFA) has reached the stage where he will either just cry or will screech and flap. Ds2 is also very impulsive and will often just take off and run for no apparent reason. He can also get extremely hyper and manic when he's tired. He's usually very happy while he's doing this but is impossible to calm down or reason with. When ds1 feels tired he will either cry easily or just lie down in a corner somewhere. Generally speaking, when it comes to 'fight or flight' ds2 goes for 'fight' while ds1 opts for 'flight'.

Theodoresmummy_ examples of my DS being a bit strange - where to start:
He is completely impervious to peer pressure and doesn't drink alcohol - which sounds great until you realise that freshers week at uni is entirely about drinking and going out.
It is better not to encourage him to do things he hasn't chosen himself - he won't enjoy it when he gets there. When things go wrong he phones up and sounds small and sad Experience has shown us that the only solution is to go to where he is and either bring him home or sort out the problem. (My DH who can be a saint drove 500 miles to collect him from a group holiday in the South of France). We both went when he found Orkney difficult!
He likes to watch TV holding my hand (nice but not normal).
When he is at home he expects us to have a chinese takeaway on a thursday and a curry on a saturday, even if no one else wants one.
He does not like new clothes: they have to sit in his drawer for about 6 months before he will wear them (same with shoes).
However he is good company, can be very funny and is very well read!

Theodoresmummy, I've been reading this thead with interest. I thought my ds1 might have 'something' too :
Chews things alot, all the time actually, and sniffs and licks things.
hand flaps when excited.
Very active.
Not great eye contact.
Hangs upside down off things (for sensory feedback) I think.
Impulsive and can be short tempered.
Is self-conscious and shy
Extraordinary memory and ability to hold information - and a tendency to come in close and tell you all about whatever it is in tedious detail.

BUT, and apparantly this is key, doesn't have strict routines, is delighted actually if things are different, isn't literal in his use of language, has an imagination, is intensely empathetic, lies (quite readily). The thinking is that he is ' highly gifted' apparantly.
I think I'm just posting this because it's been my experience, that 'spectrum behaviours' can apply outside the 'spectrum' if you see what I mean?

I hope I've got this right aig and coppertop! Sorry if I've got it all wrong. . . .

I think with a lot of our kids the best thing is to work out which bits of information are helpful (in understanding and living with our children) and which don't fit. My ds is rigid ; he does not like any surprises, even nice ones; but is fine when he knows what is happening. He was incredibly active as a little boy but calmes down around 8 ish. All the other mothers I knew found him very difficult as a little boy, as when upset he would hurt their children. He can still show hugely inappropriate emotional reactions: they don't happen often, but are startling when they do and he has difficulty expressing feelings,especially if he is unhappy. He is very bright and academically able but not neurodevelopmentally typical!
He has never been assessed for this by anyone (apart from me).I don't think he has enough problems to get a clear diagnosis but I think he is definitely PDD NOS.
(As well as being his mother I am a Community Paediatrician so see a lot of little boys with social communication difficulties and am part of an ASD assessment team. My rather unscientific screening threshold is if they are more difficult than my ds they are probably on the spectrum. Although we do do a more detailed assessment!).

That's really interesting aig, thank you. Does it mean that your ds is not on the spectrum then? Is very unclear all this isn't it? There seem to be so many associated characteristics, like some I listed for my ds, but these are undercut by not having some of the big signifiers such as strict routines etc, which means he won't get a firm diagnosis.
I suppose I just posted because I wanted to share with theodoresmummy, some of the 'grey' areas where it's possible to live - right over on the edges of the multi-coloured spectrum, I suppose!

Another one who has self diagnosed her son - he is nearly 6.

After he started school I decided that something wasn't right, he wasn;t achieving in school despite being very able and was agressive, lacked eye contact and just lost it - like he was in a world of his own. No one else saw there was a problem as he was mostly well behaved if quiet at school.

I took him to see a private kiniesology specialist - the upshot he is hyperactive and suffered from dyspraxia. We have dealt with neurological blockages, diet, nlp for confidence amongst other things.

A year later he is - doing well in the classroom, has a great pencil grip and can write very well. We have a much better relationship and there is a huge amount of trust there. He can still lose it sometimes and can be aggressive if threatened or bored, but I understand him so much better.

My son didn't have severe problems but they were enough to affect our relationship, that with his peers and his progress at school. £800 well spent IMO

I would be interested to hear how you improved your DS's pencil grip too. My DS1 is query dyspraxia/ASD, and his handwriting is very very poor, infact some of the children in reception class write better than him & he is soon to go into year 3!

My ds2 the same pink champagne. We need her to come back, soon, before they start Y3 anyway. . . .

Have a look at:

www.sunflowertrust.co.uk/index.php

www.sunflowertrust.co.uk/What_is_the_Therapy-i-59.htm l

This explain it better than I can, they run bursaries or you can go private - cost us £800-£1000.

It is something that you really need to buy into as a parent, even when it gets a bit wierd. Certainly you will find yourself questioning your abilities as a parent which can be quite difficult. Both DH and i had discovered kiniesology for treating back problems that we had had, so we trusted the treatment and the practioners. Certainly the treatment that DS1 had, went much beyond that.

The best way I can describe it is unpeeling an onion, first he looked at structure and checking that all the bones and muscles of ones body were functioning properly, then looked at diet, then allergies/insensitivites with some homeopathic remedies.

He discovered that DS1 had a neurological blockage with writing - so he cleared that out and DS1 was happy to write as long as you put the pen in his hand. But couldn't pick up the pen correctly or once picked up move to right position. When I mentioned it, he used kiniesology to re-order it (can't really explain how it works). Immediately he could pick up the pen correctly and now has great handwriting .

Same result on reading, despite being bright, DS1 couldn't read at the start of the spring term year 1 - he has now just moved up to ORT level 7/8 and is starting to fly.

NLP is neuro linguistic programming

Bascially, you repeat positive mantras every day - they are tailored to your childs issues.

So one of DS1's was - "I am calm, confident, relaxed, brave and in control."

ahundredtimes - I think he is on the autistic spectrum but not enough to get (or need) a diagnosis of AS. If you look at the Gillberg diagnostic criteria for Aspergers synsrome (you can google them): he scores above the threshold in 4 of the areas (Social impairment;Narrow interest;Repetitive routines;Non-verbal communication problems) but not for speech and language problems or clumsiness.
A lot of his difficulties are much better now (he was a nightmare little boy) but the core deficit is still there.
My brother is very similar and also very bright; one of his dds is like my ds and my sister's ds is also bright and odd!

Hi,
Hope someone can give me an insight. My ds2 (3.3yr) was "unofficially" diagnosed yesterday with autism from his ENT dr. Originally we thought he may have glue ear as he has very, very limited speech (almost sounds as though he's heard the words underwater when he repeats them, hence why we thought he had glue ear). His other paediatrician thought either glue ear or autism, Hv thought glue ear & his speech therapist said either. He'll be seeing his paed dr & a specialist in August so hopefully we'll know more then but could'nt think where else to post this.
I've looked up autism on the net & he meets so many criterias except for the lack of social interaction & aggression.
I'm just wondering if there's anything to look out for while I'm awaiting diagnosis or just wondering full stop (sorry head's all over the place).
I had a gut feeling from a few months that something was up (rarely babbled, seemed to prefer being left to his own devices). Now apart from very poor speech, he's a loving little sweetheart of a boy & we'd rather know what it is instead of just guessing.
I aplogise if this is all rambling, just needed to let it out.

Any feedback would be fantastic.
x

Hi HellKat. Sorry to hear you've been left in limbo like this.

The autistic spectrum is so vast that you'll probably find that some bits 'fit' a particular child but others don't. Some may be aggressive but there will also be a lot who aren't. The social interaction bit can also vary from child to child. Ds2 (4yrs and ASD) seems very sociable as he joins in with games spontaneously and chats just as easily to people he doesn't know as to those he's known for ages. However, he doesn't seem to know the 'rules' of interaction and will invade other children's personal space or misunderstand other people's intentions. At the same age ds1 (ASD and now 6yrs) wasn't really interested in other children at all. They might as well have been pieces of furniture for all he cared.

When your ds wants something, does he try to let you know in any way? My 2 boys would either assume I knew what they wanted or woul grab me and pull me over to the fridge or wherever they wanted me to go. In contrast dd (14mths and not autistic) will attract my attention by calling out and will then point at what she wants.

Hi Copper,
Thankyou for that.
When he wants something he's never gestured towards it, either dragged me to it or more likely than not, tried to get himself lol (instead of asking for a drink, he'll grab a chair, his cup & try to do it himself).
When he's playing with other children, I forever have to tell him to be careful because he's always trying to grab them, hug them etc (most kids don't like him doing this).
Thanks alot for the feedback, it means alot. It'll just be great to know one way or another.