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Gut feeling re autism - help please

48 replies

MummyBex1985 · 02/01/2016 21:39

Hi everyone

First time posting on this board - sorry, but I need some advice please.

My step son is 12 and has always been a little different to other kids. But I'm worried now it might be something more. For background, he's been with us since he was 3 - his real mum isn't really around.

We have always said he is very much like my brother - he was DX as autistic 2 years ago at age 25.

Basically, he is socially awkward. He doesn't seem to want to engage with us at home (there are six of us) and will spend every minute by himself. He has never managed to have close friends and when he is with his younger siblings he regresses to being a toddler - making daft noises and acting in a very immature way.

He struggles at school (despite being moved ahead a year in infant school - he was moved back after a couple of years) and is below average for where he should now be. However, he has a brilliant technical mind and will fix anything and everything without even really trying!

The other things that bother me are his lack of common sense (he actually ran in front of a car the other day to get past it quickly rather than waiting for it to go past, and he doesn't seem to grasp how to do day to day things - he still struggles to tell the time and tie his shoelaces). He's a huge hoarder and gets attached to anything and everything, including pebbles and rocks from the garden! He's also a very picky eater - given the choice he would eat plain pasta with no sauce, tender meat (nothing that you have to chew) and pizza (but he takes the cheese off!). He doesn't really want to eat a normal meal (which unfortunately the in laws pander to which makes it worse).

He also takes no pride in his appearance - he doesn't even seem to be able to get dressed properly, let alone think about doing his hair (his 9 year old brothers are very style conscious).

I'm sorry if I'm rambling but I just feel that something isn't right. Maybe one of those things in isolation wouldn't bother me, but there are so many things that aren't quite right.

I would be grateful to hear any thoughts. I don't mean to concentrate on the negatives as he's a lovely boy, but I have to spew out the negative stuff to hopefully get some help from you knowledgeable lot.

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zzzzz · 02/01/2016 21:45

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PolterGoose · 02/01/2016 21:46

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MummyBex1985 · 02/01/2016 22:20

Yes his dad is also very worried. Thanks for your help. Just don't know what to do next or even if I should be worried!

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tangerinesarenottheonlyfruit · 02/01/2016 22:59

Watching with interest as I have similar concerns about my DS. No idea what to suggest though, sorry.

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Flanks · 02/01/2016 23:10

Given his age and you allude to a poor parental relationship with his mother at a young age, I would suggest attachment difficulties before asd.

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MummyBex1985 · 02/01/2016 23:10

I should have clarified why I posted really.

My brother has always struggled and I worry it's because of his late DX. He is exceptionally bright but cannot get a job as he doesn't have the social etiquette required to get through an interview.

I just don't want the same to happen to my DS if I can do something to help him now.

Tangerine no worries, it's reassuring to know I'm not the only worried parent.

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MummyBex1985 · 02/01/2016 23:11

Thank you Flanks - that could be true. He is very attached to his paternal grandparents and has no interest in his mother.

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zzzzz · 03/01/2016 00:03

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Flanks · 03/01/2016 06:50

Zzzzz, it is hard to say for sure without a lot more information about the mother issue and I wouldnt want to ask for the info on a public board.

However, hoarding, fussiness with food, perpetuated childish behaviour mixed with charm, are all very common behaviours in attachment disorder. They can be learned defensive behaviours because of eay trauma and a lack of attachment to a safe adult early on.

Whether it is the case here or not I can't know, but I thought it worth mentioning. The behaviours can be similar to asd and asd has a wider public awareness about it. As with all situations of this nature, if the concerns are severe enough a proces of questionnaires and interviews beckons!

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amberlight · 03/01/2016 09:31

Autism in secondary school age young people tends to show itself in panicked/confused/withdrawn responses to social situations. Often a real fear of going to parties and other events that would normally be thought of as fun. A hatred of going into busy/noisy places like supermarkets; not just an 'Oh mum, I hate shopping', but a real fear/meltdown type of response during or after such a visit. Friendships are a real struggle to maintain, with lots of misunderstandings and loneliness. Easily misled by others. A strong reaction to some sensory stimuli. Huge need to know what's going to happen next, and prefers a good routine - often with dedicated hobbies that others would find boring/done in ways that others find mystifying. For example collecting info on a subject for years and years, with it ordered in very precise ways. Or collecting one of each style of something and being panicked if people move it or damage it. Outrage or deep distress if rules are broken, even if there is a good social reason for them being broken. Difficulties with eye contact and inferring what eye contact/face expressions mean. Voice tone may be over-precise, or words used in an unusual way.
Not a full list, but useful things to think about for anyone reading.

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frazzledbutcalm · 03/01/2016 10:28

Attachment disorder .... we were told it presents as ASD, and only with further professional involvement (deep digging) it is then determined whether it's attachment disorder or asd. We were really shocked when details/reasons/behaviours/causes were explained/shown to us. Made us think that if people were given this information/did this course before having children then it would scare the living daylights out of us all and no children would ever be produced!

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PhilPhilConnors · 03/01/2016 11:11

I'm very wary when people start suggesting attachment disorder, particularly when there's no evidence for it.
The NICE guidelines for RAD are very clear that it is only a possible diagnosis when certain criteria are met (iirc section C of the guidelines for RAD). However this doesn't stop some professionals from twisting and convoluting information to arrive at RAD.

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PolterGoose · 03/01/2016 11:33

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amberlight · 03/01/2016 11:40

Aye, re the 'refrigerator mother' nonsense. Often, mums of autistic youngsters are also autistic. Both need different parenting styles to a 'typical' mother-child situation. If an autistic child is in autism-meltdown, they need to be left alone (where safe) to restore internal brain temperature. To a clueless professional, it will look like the parent is being neglectful and detached, by avoiding physical contact with the child, eye contact etc.

And it will look like the child is having problems attaching themselves 'normally' to that parent. Nope. Just normal-for-autism.

Our whole communication system is different, and our sensory/social needs are different. A lot of damage has been done by inexperienced professionals flourishing 'attachment disorder' and 'neglectful parenting' papers at some very good parents whose children have genuinely different needs. Plus making them do hugely stressful things to their child in order to please the social workers, etc. (Rushing up to a child in meltdown with lots of encouragement and eye contact and praise etc, as an example).

A good professional can spot which is which, out of RAD and autism, of course.

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Flanks · 03/01/2016 12:00

Fully agree Phil, which is why I am not diagnosing, I am suggesting. The only reason is due to the relationship with the mother which for good reason I also do not ask any more about. If it was a particularly poor one with some trauma involved then attachment disorder is a better call than ASD in most likelihood.

The problem with attachment disorder (much as ASD had years ago) is that too many people interpret it as parent bashing, when in fact as you say it does require some considerable environmental evidence to support it beyond 'they were shit parents'.

The behaviour would fit with attachment disorder if such a trauma exists in early years. In the absence of trauma, it is unlikely. That being said, it is certainly more prevalent than it is diagnosed, because the behaviour is so often interpreted differently, most of the time not diagnostically at all, and the right questionnaires are never presented.

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zzzzz · 03/01/2016 12:19

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Flanks · 03/01/2016 12:45

Attachment disorder differs because there is not a preexisting biological risk factor as there is with asd.

It is usually found in situations of abuse or neglect during very early years. So no, not nearly as prevalent as asd.

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zzzzz · 03/01/2016 12:50

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PhilPhilConnors · 03/01/2016 12:55

But the op has said he has strong attachments to his grandparents and (I assume) his father and the op?

Attachment disorder as I understand wouldn't see these strong attachments, there would be lack of appropriate bonding as the early history of the child has meant they haven't learnt to make attachments (hence attachment disorder), so I assume the op would not be able to comment on the child's strong attachment to grandparents.

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PhilPhilConnors · 03/01/2016 13:00

Weirdly in my area (apparently one of the worst for ASD diagnosis), if you have a child with HFA, you are likely to be strung along with a working diagnosis of RAD and the finger firmly pointed at parenting.
With adopted children, the cdc are very keen to diagnose ASD, even when the child barely meets the criteria, and many adoptive parents have to fight for a correct diagnosis that will actually help the child.
It's very strange. I don't know if this particular scenario happens in other areas, but it is very common here.

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PolterGoose · 03/01/2016 13:00

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Flanks · 03/01/2016 13:13

It may well be polter I threw it out as a suggestion purely because of the comment about mother and certain behaviours. I was pretty clear a lot more info was missing though!

Zzzz Biological risk factors refers to genes, inheritability etc. There tend to be sich risk factors in nearly all SN/SpLD. It doesnt mean that such difficulties are certain to occur, just that the chances are greater.

Much the same way as many people are biologically at greater risk of heart disease. Doesnt mean you will have heart disease, just that it is more likely.

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zzzzz · 03/01/2016 13:19

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Flanks · 03/01/2016 13:22

Not sure what you are asking anymore zzzzz. I'll move this to a pm if that is ok? To avoid sidetracking the thread.

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zzzzz · 03/01/2016 13:32

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