ASD Spectrum, confused about if yes or no

[wildfish]

I hope you can bear with me on this. I am new and confused about the whole ASD thing. I realise it covers a wide range. So I may be going back and forth over this. And contradict myself.

I have a DS 5. He is currently being assessed, however I would say that most of the people involved believe he is ASD on the spectrum. Perhaps where and how much is up for debate, but it seems they have given enough hints about it. His mum is one of only a very few who cannot accept there are any symptoms and behavourial traits. She believes a simple better parenting (my poor parenting) and a strong rod (I'm too lax) are the answers. (we are divorced and DS is with me).

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He has various behavioural patterns that I would acknowledge as symptomatic of ASD. But generally mild.

Speech not so clear.

Not picking up on social norms - fluently. I mean he does observe, but he often doesn't apply them consistently.

I've noticed more that his "creative statements" are actually from programs/people and are often repeated in full - sometimes not really appropriately.

I read somewhere, someone talking about "stim"? Something they do to relax? I know he has a certain action/sound he makes whenever he has had a stressful day. He acknowledges it relaxes him. He actually asks to do it, and knows to do it only at home when no outsider is around.

He wants friends, but doesn't actually seem to understand how to keep them or make them.

He can get very emotional over little things.

He sometimes doesn't seem to know when to stop (doing something).

His frustration often involves lashing out in attitude and occasionally physical (although this is still rare)

He is very observant.

He has a very good memory (remembers everything) - just seems to chose when to recall things, and its also not immediate remember recall.

He doesn't seem to pay attention in the class, or understand what the teacher is saying, often relying on following the herd approach. Seems to queue up processing instructions.

Motor skills are weak.

Talks about things he wants to. Doesn't seem to be able to talk about other things unless interested. (with other people)

Mixes reality and fiction much more, recently.

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The trouble is I can often wonder if all of this is simply normal too and I can't quite balance where I should be looking.

I let him do his "relax" technique, because I think it helps him. However maybe I am encouraging it by letting him....if you see what I mean.

He can't make friends - just shyness?

Over emotional and lashing out - just from the stress of school and parental fighting?

Motor skills - he just needs a lot of practice.

School attention - needs a firmer hand.

Talking to others and mixing reality - just being a child?

Good memory? So have I?

Slow in processing? Just thinking about it in more?

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The psychologist, teacher, previous teacher, speech therapist, all say he is an enigma. He displays traits, and yet sometimes does not. He is not consistent. But like I said, they all do believe there is something.

I apologise for coming here for what is very mild SN symptoms, but I needed a sounding board. Professionals don't really want to talk informally incase they say something later is wrong, the web is so overloaded with information which covers everything.

It is only recently I understood that the "doesn't want to make friends" can really be "Really wants to make friends, but doesn't know how to". Again it sort of made sense (light bulb moment), but then I thought don't lots of shy children have the same problem?

The other thing is many "one time seeing" people, who are not experts - just parents, immediately think there is something too (mentioned to me much much later dates).

Any comments to help me understand?

Sorry about the babbling on here

Thanks

Hi and welcome ... ca I ask what your connection with child is as you introduced yourself as having a son ie: DS

I am talking about my son. Only 1 son. His mum and me are divorced. And son lives with me. His mum doesn't want to acknowledge there is anything up with our DS, and unfortunately her new other half is one of those who also believes its just bad parenting (on my part).

Hi Wildfish, Your DS sounds just like my DD. She shows a lot of the traits of ASD, which I have found out after voicing my concerns on MN a few weeks ago. Same as you, I still wonder if I'm just looking into things too deeply to find a reason for DD behaviour other than me just being a bad parent! My partner is always telling me I'm too soft and make a rod for my own back! On a good day DD is lovely but on a bad day when she has meltdowns, life is hell! Like your DS she is inconsistent and although has learning difficulties (currently in process of being Statemented) her behaviour at school is different to that at home. All very confusing. She has seen a Paed who diagnosed her as ADHD but then saw a different one who disagreed and so signed her off and referred back to Ed Pysch. Sorry probably not offering any advice to help you, but just wanted to let you know you're not the only one!

How is he coping at school? What are his play skills like? Can he talk about abstract concepts or is his conversation very factual?

Welcome to the SN board.

I think it can be quite a common thing for one parent to see that there could be a problem while the other (for whatever reason) refuses to accept it. There are probably quite a few threads on here where people have talked about similar situations where their dh/dp has been in denial. If you were to speak to my dh now and hear him talking away about autism, you'd probably find it very difficult to believe that back in the beginning he was the one who insisted that our ds1 had no SN at all. I can't see any reason why a wife (or ex) can't be the one to refuse to see it, as in your case.

I can see quite a few similarities between your ds and my ds2. Like your ds he is seen as something of a puzzle because he doesn't quite seem to fit a typical idea of what a child on the spectrum should be like. In ds2's case the Paed decided to give him an extra year to see how he progressed and then gave him a diagnosis of Aspergers.

Ds2 has a very good memory too, probably verging on photographic and, like your ds he is also very observant and seems to spot the tiniest of details. He also has auditory processing difficulties and finds it difficult to follow instructions unless they are set out very simply. Again like your ds he has learned to develop his own coping strategies. They can be so successful that to the casual observer it would appear as though he has heard and understood perfectly.

It sounds to me as though you are doing all the right things. Letting him make his sounds to calm himself down or de-stress is exactly the kind of thing that our Paed would suggest. It's not being a lax parent. It's recognising that this is something that your ds needs in order to be able to cope with his world.

The 'now you see it, now you don't' thing is also fairly common with things like AS. I can remember ds2's Reception teacher telling me how well he was doing when he first started school. By the 3rd week he was displaying lots of ASD behaviours and his teacher joked that he had obviously just been lulling them all into a false sense of security first.

Hi nikos. Mixed coping at school. He is struggling in getting new ideas - we are told. Poor fine motor skills means his writing/drawing is at the low end. Play skills are he tries to join a group, but only on the periphery. Seems to play alone, but the kids are still in the accepting stage, so do play sometimes, and sometimes don't. But at the end he is coping. He doesn't come back crying or have tantrums at school. So he copes, but the school feel he isn't get the best out of the curriculum, hence the extra help request and assessments.

Hi, sadnog and coppertop.

Yes what you say is very true.

simple instructions, yes. complex can mix it up (or forget). details yes. confusing contradictions yep.

Overall he is a happy child. Sometimes (like all children) he can get into a strop.

Have you had a look to see if he fits the symptoms for dyspraxia? If he is on the spectrum, he sounds quite high functioning. I'm never of the wait and see camp but he is still very young to have accomplished social skills. Does he use imaginative play?

Hi Wildfish

Your parenting, even if your ex wife's criticisms were true, would not lead to the traits you describe. Which does not mean he "has" ASD (inverted commas because I'm very very sceptical about this whole issue)just that focussing on parenting is barking up the wrong tree on her part.

Hi and welcome to the sn board, your ds sounds very similar to my dd1 (who is also 5), my dd has AS (Aspergers). Dd has poor motor skills which shows more now she's at school as she struggles to run as fast as her friends and finds it hard to go up and down steps. Dd doesn't show all the traits of AS/ASD but the ones she does are very odvious, she comes across as being over sensitive, she likes to win games and has to play by the rules, she struggles to understand friendship but because of her huge personality and imagination she has a lot of friends (but no close friends). Her social skills are improving by using social stories with her, we have also had to work on personal space as she talks very close to people (in their faces).

Dd1 is always happy, she doesn't seem to mind when nobody wants to play with her as she's happy to play on her own. As long as dd1 is happy i am happy .

Welcome to the board
I could have written all of that about my boy...he sounds almost exactly the same
The 'enigma' bit made me laugh...my ds was described as 'an enigma' many times at primary school (he has just started secondary)
My ds has a dx of aspergers and dypraxia

Hi Wildfish

Welcome to mn. Sounds like you are having a hard time.

Your son's difficulties sound very much like my own DS2, he now has a formal dx of asd (high functioning). He was also described as a bit of an enigma! One minute we all would think - "Yes, definitely autism", and then the next, "No surely not". It was a confusing and stressful time.

Agree with Lingle, it's not bad parenting, nothing like it, - you know every wheel and turn of him!

Hi nikos, had to google up dyspraxia. And yes he does have symptoms shown there, mainly the tricky and fiddly side. He is on one of the referrals about the motor skills side.

On imaginative play, I would say yes he does. It was one of the topics I had with one of the assessment specialists - because in some examples he showed none

lingle, absolutely agree. But that's what worries me is that since she can't / refuses to see what is in front of her, she uses - in my view - inappropriate techniques (thinks she has a spoilt child for example).

Marne, again another set of behaviours I can relate to.

troutpout - He's been described as an enigma since nursery They felt there was something wrong, but didn't want to say it - in case it was just development. I didn't want to label him. But now I realise if I can understand what it is, I can make sure I can help him and get the help he requires.

HelensM - yep I go through that every day I think. Ah yes definately autistic traits..and then ...oh how grown up, sensible and proper he is acting I was wrong he's fine To be honest I am happy/fine with him, but I just want to make sure whatever issues there are, can be worked around, overcome and don't cause him any problems.

Nikos. about the wait and see. I think another part was that they wanted to see how he was this year, said it would show up more (and they were right!).

www.spdsupport.org.uk/information.html

If you have a look down this list you may find some useful info?

wasuup : Thanks, again I can recognise some of that too. All this info and diagnoses explains why he is being referred to so many areas.

My son is 7 with a dx of ASD and sounds similar to your son

I especially noted the excellent memory and poor motor skills both typical of ASD

Take him to all the appointments and see what they say

My mantra is "Parenting a child with ASD is a privelege not a chore!"

I try to see it as a bonus not a burder

HTH

Hi Yirtgirl,

Of course, I will take him to all the appointments, and to be honest the way he is, it has never been a chore at all.

My main priority is to ensure that he is not disadvantaged as he grows. With the knowledge there is something, I think the school is more tolerant, over some of his quirks, and provide the extra support.

But while I can recognise the symptoms, I can't help but flip back and forth wondering "Am I jumping to the wrong conclusion, its fine." "oh definately got xxxx" - even after reading those links

wildfish

Am glad to see that you're not in denial re your son's additional needs. Your son's special needs are certainly not because of any lack of parenting on your part, far from it. Am no expert at all but from what you describe of your son's behaviours I would be thinking he would be somewhere on the autistic spectrum. There may be dyspraxia too.

Has your son ever seen a Developmental paediatrician?. If not your GP can refer you to such a person. This may be worth looking into as these people can diagnose. An OT (occupational therapist) may also be helpful with motor skills difficulties. Again a GP can refer your son.

"Labelling" should be seen as a signpost to getting more help.

With regards to additional support in school I would seriously consider applying for a Statement of special needs from your LEA sooner rather than later. Support without a statement can be patchy at times; a statement as well is a legally binding document and thus gives more rights. Other plans like School Action and School Action plus are not legally binding and can offer only minimal support (it also depends very much on the attitude of the school).

You are your son's best and only advocate. No-one else is better placed than you to fight his corner for him.

www.ipsea.org.uk is a good website re statementing.

"since she can't / refuses to see what is in front of her, she uses - in my view - inappropriate techniques (thinks she has a spoilt child for example)."

Wildfish, I'm the child of a marriage where our parents used us as footballs in their arguments. Most people on this board seem to have gone through a phase where one parent thinks the child has special needs and the other one doesn't - it's almost inevitable where the difficulties are mild. I am the mother of a 6-year old who outgrew every single one of his receptive speech and associated social communication difficulties and now has an enviable set of skills. And I cannot bear health professionals telling me things about my son that I don't agree with. So I have some sympathy with both of you.

Do you want to talk more about your ex wife's parenting techniques and attitudes? It seems to me that you two need to somehow reach out to each other about this issue. Otherwise things could go the way they did in my family, with each parent blaming the child's issues on the other (my parents are STILL doing this about my brother who is 44).

By the way, the term "in denial" is not one to use to your ex - if anyone used it of me that would be the end of my conversation with them - but I expect you figured that our already! "sceptical" is likely to be more acceptable!

I'm so glad someone else feels so strongly about the phrase 'in denial'. We arent even allowed to raise healthy scepticism with professionals but you see that word registering in their eyes. There is something so patronsing about it.
Excuse the sidetrack wildfish

Hi lingle, nikos. You are both right of course. I guess my particular issue with the ex partners approach is that - we are now in court over "custody". And her main attack line was that I am unfit, and DS symptoms are really all down to me, and all he needs is a firm hand and rod and thats only something she can provide, so she should have full custody.

Now while I can understand the skepticism about whether DS has any problems or not, her choice to use it as a battle cry, distracts effort from actually helping DS out.

I flick between "some pressure" and "let it go for now" and "gentle" approach. I see better results like that. Her new partner is of the macho firm hand stance. They don't make allowances. I really don't know if she genuinely can't see any issues, whether it is a "denial"/"sceptism", or simply a handy tool to use in the courts.

lingle: I still hope that DS out grows the issues, and sometimes I think he is he is

I, originally when it was first raised in nursery was very afraid of getting a label attached by some pscyhologist who was looking for a problem.

However now, I see the label is a help if used correctly.
The school have applied for a 1-1 assistant - on the basis of a report from the ed psychologist. I guess that's like what you were saying attila (maybe different since we are in Scotland). That may take time since it is all budgetary. The ed psychologist has referred to 4 more units, occupational health is one, autism group is another, I forget the other two.

Now I just want to get the appropriate best level of help.

I can see he might grow out of it, he might learn to adapt himself to not show it, with extra help he might learn how to handle situations and fit in easier. What I don't want to do is simply shut my eyes and leave him to struggle through school and beyond. I'd rather waste a lot of time and find it was not needed - if that makes any sense?

Wildfish -hope you realised I was just commenting on lingles post and not reflecting on your situation

nikos Yep Although I had to search to see if I had used in denial ......because it's what I think in my head

Yes, all makes sense wildfish.

Good luck with ending the custody battle as peacefully as possible. Look for common ground. You can't have much less in common than my parents did!

I think that, whilst parenting cannot cause your son's issues, cooperation between his parents is going to be very important in helping him cope if they persist.

Sorry for confusing you with the "in denial" issue especially as Attila was being supportive - I know many of us find it very useful shorthand which is how it was being used.