Aspergers/ASD support thread

meritaten

my Grandson has Aspergers and was always on the 'normal' scale of development (which may be why he wasnt diagnosed until he was 10 or 11). my nephew, I sort of knew was autistic, by the time he was six months, but he wasnt diagnosed until he was two (severe Autism). my granddaughter is ADHD suspected Aspergers and she was 'normal' development and was diagnosed at five.
So no. I wouldnt immediately suspect Autism. There are many many factors why a child may lag behind others on the development scale.

kingfisherblue

A growing number of children have delayed speech - I was talking with a friend about this last week. She is the manager of a local nursery and has additional training as NVQ assessor, in special needs, and many other areas. The nursery where she works is in a deprived area and she has seen an increase in children who do not speak properly (or at all in some cases) until they are older than the published milestone ages.

Also, remember that milestones are based around an average age, so some children will be faster learners and sonme will be slower learners. Even if your child has developmental delay, it doesn't necessarily mean that it is autism. Diagnosing from an internet search is a dangerous activity - it only serves to worry and distress you, making you want to search for further information and answers. (A few years ago, my GP told me on Christmas Eve that my daughter had lesions on the bone, following a MRI after cracking her collar bone - the internet lead me to believe that it was cancer. When I took her to Alder Hey Hospital for her appointment immediately after Christmas, she was diagnosed with a rare, non-cancerous tumour that is connected with growth and disappears as a teen heads towards 18-19 years old. No treatment was required and it has now gone - but I spent the worst christmas of my life, thanks to Google and my overactive imagination!)

I would do as others advise and stop searching on Google. Think about the things that your child can do, and try to help with the things he can't. Use lots of repetition, chat about a variety of things. If he is watching TV, watch it together and encourage talking about what is happening.

I hope everything works out well for you

meritaten

I was reading through this thread when my cousin popped into my head. He wouldnt speak and would point to whatever he wanted. he was assessed as below normal development at age 3 or thereabouts as he wouldnt interact with the clinic nurses. then he went to school and my aunt was gobsmacked to find that he was actually the brightest child in the class! his written work was extraordinary. his maths was about two or three years ahead. He never spoke much in school, he was always top of the class all the way through - he doesnt say a lot now - but when he does - everyone listens! They have to - he is the boss!

RazWaz

mumofthreemonkies83 wrote: »

No I wouldnt assume autism.
Im in a similar position, I figured my 4 year old was slightly delayed and like your child often prefers to play alone but it wasnt until the teacher took me to one side and mentioned her concerns that I paid attention. I guess I didnt want to be seen as a manic mother worrying over nothing

My son has recently seen a paediatrician, referred by her to an eye specialist, a hearing specialist and also for a blood test to rule out some muscle illness ( just in case as he complains of aches a lot) and it was dicovered on Friday he does have a hearing loss on one side which *may* explain his delay.

If you are concerned I would ask for him to be assessed by a specialist just to lay your mind at ease.
Hope everything works out for you and your boy
Mumof4 xx

I'm partially deaf in both ears, and it did slow me down a lot as a young child (first word at 3.5 years old). I caught up pretty quickly though so I wouldn't worry too much about it. Just make sure you make a point of facing him when you talk and he'll have a good chance of learning how to lip-read.

Do try not to over pronounce things though as that actually makes things harder for a lot of deaf people.

raq

Absolutely wrote: »

As others above have said, it's not an automatic assumption to make but understandable.

I have twin boys. Both had delayed speech, language and didn't reach the usual baby milestones on time. After LOTS of tests, I've been told although they both have learning difficulties, only one twin has autism.

hi there

I keep saying to my husband that I know the doctor will come back with a 1 out of 10 bit of autism for our dear son. As my husband stated, "IF he has, then he has and we will get through things".

HOw do you cope??
x

raq

mumofthreemonkies83 wrote: »

No I wouldnt assume autism.
Im in a similar position, I figured my 4 year old was slightly delayed and like your child often prefers to play alone but it wasnt until the teacher took me to one side and mentioned her concerns that I paid attention. I guess I didnt want to be seen as a manic mother worrying over nothing

My son has recently seen a paediatrician, referred by her to an eye specialist, a hearing specialist and also for a blood test to rule out some muscle illness ( just in case as he complains of aches a lot) and it was dicovered on Friday he does have a hearing loss on one side which *may* explain his delay.

If you are concerned I would ask for him to be assessed by a specialist just to lay your mind at ease.
Hope everything works out for you and your boy
Mumof4 xx

Oh thankyou so much

We also have had, hearing test, blood test, all the other professional bodies as well. All been fantastic I must admit. My mother who I turn to on everyday things who is also wonderfully supportive just thinks he is a typical little 4 1/2 year old and is stuborn. Apparantely just like MY little brother was 35 years ago. My mam also stated it is good these days there is lots of people but also believes there is too much red tape and gets parents into a huge stated, just like I have been.
x

Savvy_Sue

raq wrote: »

keep beating myself up a lot lately and maybe looking into this too much.

Please stop beating yourself up. What difference does it make if he is or if he isn't autistic? There are things you can do which might help his speech and language, people are looking into the delay: meanwhile he's still your boy, you still love him.

DS1 was always a bit 'different', but never enough for me to jump up and down and insist on finding out why: as it happened the school doctor gave a tentative diagnosis of mild Asperger Syndrome when he was 12. I think the nursery suspected, I am sure primary school suspected, but actually I'm glad we didn't know sooner because although he was very hard work I think if we'd known sooner we'd have made too many allowances for him, and he'd have ended up very much more 'different' than he is now.

raq wrote: »

I keep saying to my husband that I know the doctor will come back with a 1 out of 10 bit of autism for our dear son. As my husband stated, "IF he has, then he has and we will get through things".

HOw do you cope??

You cope, that's all. You cope, because what's the alternative? I'm not sure if you're expecting the doctor to say it is autism, or that it isn't autism. To be honest, the professionals don't always know (or won't say) either way: it's a 'not sure' or 'not typical but some traits' or a 'maybe'.

And IMO the diagnosis isn't the important thing: it's getting the help that's needed! At 12, we opted not to go for further investigation and a firm diagnosis: as the next school doctor said, he didn't seem to need any extra help, so what would that achieve? He might need help as a teenager: if he wanted to 'fit in' and found he couldn't, that can be a problem. As it was, he didn't mind being 'different'.

He started Uni and was fine, but then it was felt that he'd benefit from a mentor to help him prioritise and keep on track. So at that point he had a more formal diagnosis so he could get Disabled Student Allowance. That came back with "fragments of Asperger's"! But it got him the help he needed.

Focus on getting your son any help that he needs, not on a label. If you get the label, use it as a shorthand when it's helpful, and ignore it when it's not.

seven-day-weekend

seven-day-weekend wrote: »

We have every confidence in his ability to do the fresh foods job. He may however, come unstuck on the supervisor bit as he will have to do rotas and suchlike and these are the sort of things (ordering and sequencing) that he finds difficult.

However, he can but try, we will ask him to make sure that if it all goes pear-shaped that he will be able to return to checkouts. At least he will have learned a new supermarket skill in the fresh foods dept.

UPDATE::

My son starts his new job on Monday 6th June, it is 39 hours per week. Delighted!!

Just to say my son has started his new job on Fresh Foods on June 1st. He has taken his Food Hygiene Certificate test and passed with 29/30 He has been given a different uniform including a HAT. He is finding the work very interesting so far (I think because it is slightly scientific ).

One misunderstanding though (Human Resources mistake, not his) - it won't be 39 hours until he is trained up as Supervisor, but will be between 16-35, varying. I'm actually quite glad about that, he can ease in gently.

We will be in the UK on the 15th June and I'm dying to talk to him about his new job. Glad it's working for him so far. The Food Hygiene Cartificate is a useful thing to have even if he didn't have a new job to go with it!

UPDATE AGAIN: (8th June) - he now has a new contract of 25 hours, so this is the least hours he will do.

seven-day-weekend

Just to say that I saw my son's Contract of Employment today and his Job Title is Fresh Baked Sales Assistant.:rotfl::rotfl:

My husband says it should say Half Baked.:)

Allegra

Quick background - my daughter is 14, and has been diagnosed with Asperger's and dyspraxia 3 years ago. About 8 months ago, she started displaying symptoms of an eating disorder, and after a visit to a GP, was referred to CAMHS. She was seen for an assesment on 20th of January and placed on a waiting list for individual and family counselling.

During the intervening period, we kinda managed to get on top of her eating issues - largely due to successfully weaning her off visiting eating disorder support websites (much as these are designed for support, the result in her case was that all she thought about was calories and not eating, thus making the situation worse).

Unfortunately, as we were only treating the symptom, rather than the cause, the self-destructive impulse emerged in a different form - about the time that the eating issues first emerged, she also started self-harming by cutting, and this quickly spiraled outed of control - no matter what steps we took to keep her away from sharps, she very resourcefully found something else to harm herself with - for instance, smashing compact mirrors and taking apart pencil sharpeners.

Eventually, this culminated at the beginning of Easter holidays, when she attempted to kill herself four times over a period of two weeks, by taking overdoses of painkillers and cutting her wrists. She was hospitalised after these attempts, and was seen by an emergency worker for CAMHS, when we were told that she will be pushed up the waiting list and also referred for a protective behaviours workshop.

It took further two months, and further chasing up by her school (who have been very supportive throughout) and the ASD support team (that have also been involved by the school), as well as starting a CAF for her, before we were finally given an appointment with a psychotherapist/counsellor. The psychotherapist saw us for an initial assesment last Thursday, and then DD had her first appointment this Friday. Later on Friday we attended the first CAF meeting, where the CAMHS counsellor was also present.

Okay, so that's the background - and sorry for the length The issue that I would like some help making sense of, if anyone would be so kind, is that during the CAF meeting, whilst setting goals on how to help DD, we raised the possibility of Cognitive Behaviour Therapy - the reason for this being that, whilst we are grateful for all that is being done for her (finally), we do fear that, once again, we are treating symptoms rather than the cause - the cause being that, due to her condition, she finds it nigh on impossible to put things into perspective, deal with setbacks, or indeed deal with anything unexpected at all. We believe that the only way for her to deal with this long-term, as well as the only hope for her attaning independence in adulthood, is to develop these coping skills as much as possible.

Now, does that, as a theory, sound all that bad ? We (the OH and me) have been over and over this since Friday, and frankly, we really can not see what is wrong with this picture at all.

Unfortunately, when the OH raised this possibility on Friday, the whole ruddy room absolutely erupted as though we have suggested something utterly beyond the pale. The OH was told by the CAMHS counsellor that "it takes two to tango" (not really sure what she meant in this context, to be honest, but she seemed very determined about it), and that DD's problem is that she does not feel part of the family which is why she'll be referring us for family counselling.

OK, good. We have actually been the ones pointing out that she has consistently isolated herself from everyone - family, school, friends - and asked for help with this. Family counselling is help with this, excellent. But we were supposed to be referred for it back in January, so why suddenly introduce this as a revolutionary new idea and also make it out as though this is what has caused all the problems ? It's a symptom of her autism, surely ? Or have we completely got the wrong end of the stick as to what her condition is about in the first place ?

Furthermore, we were also told that we are making DD feel like a burden - this was based on us asking, after the first appointment, if the time could be changed, as our respective employers were not keen to release us on the weekly basis during the core hours - please, an early or a late appointment if you can ? DD was present for this conversation simply because the counsellor told us, with all of us present that "she will be seeing her every Thursday at 2pm for the next 8 weeks". This could have been mentioned to us in private, or over the phone when the first appointment was made, then DD would not have had to hear that we'd be in trouble at work unless a more sensible appointment was made. We were also told off for saying that "our lives revolve around DD" - and this was at the CAF meeting, where DD was not present, and really, it was no more or less than a simple statement of fact. It was not a moan, and it was said with no resentment - her demands are currently 24/7, and we are meeting them as best as we can, but ideally, we would like this put on a more even keel, which is why we are seeking help. Right ?

Anyway, the above paragraph was just me venting, really - I guess that, ultimately, people who deal with youngsters with mental health issues probably do meet more than their fair share of disfunctional families, which is why they are quick to assume the worst of everybody. Better that way than miss out on the situations where the safety of the youngster is in question, I guess. Or perhaps she was genuinely trying to help by pointing out the issue she though we had missed. It doesn't matter, really - all that matters is helping DD, and if we are belittled and dismissed in the process, so be it.

But we still do not understand - and this is our big problem - why the suggesting of CBT was met with such derision. All our research suggest that for people with ASDs this has proved to be far more effective than NT psychotherapy, and even if the experts disagree that this would be the best course of action in DD's particular case, surely just mentioning it was not such a bad thing ?

Frankly, I am scared that DD will not be helped in the most appropriate way, and that things will not get better for her and for the rest of the family, and feel I would like to bring the subject up again at the next meeting - but am really scared that we have commited some weird faux pas by mentioning CBT in the first place, and do not feel confident about bringing it up again until I understand a bit better why we got shouted down with such a force when we first mentioned it.

Opinions, please ? Would be very grateful.