As today is Autism Awareness day, I thought I’d mention that last night’s Horizon was all about living with Autism.

Horizon – Living with Autism

Was a very interesting watch, and offered a bit of insight into how the Autistic mind works.
Enjoyed seeing a couple, both of whom had Autism, talk so honeslty and candidly about their relationship.

Also found the Sally-Ann test to be a bit of an eye opener.

Worth a watch, even if you are not directly affected by Autism, just for insight in to why some people may view the world from a different perspective.

Wish STW had a ‘like’ button, one of my friends from school has an autistic child and works for the autism society, great lad but life can somtimes be hard for the parents, particularly when they have 2 other kids

I’ve got two autistic daughters

Best description I’ve heard recently was that its like a Mac in a PC world – they’re wired completley differently, so you can’t expect to press PC buttons on a Mac and get the same results, you have to learn how to do it a bit differently 😀

Having Aspergers is a bit of a complicated thing to explain. Especially if you’ve spent the last 30 years learning to mimic and predict outcomes of social situations to reduce anxiety and camouflage it. most of the time I get told that I couldn’t possibly have it, coupled with ‘ooh I haven’t seen you in months…’

Best explanation to me was thinking you were living in Spain, preparing for that, wondering why nobody understands your Spanish and why you don’t get the signposts, only to find out you’ve been in Germany all along.

That however is just the tip of it.

My Daughter (not biologically) was diagnosed with Aspergers at 13 last November. Is finally starting to get the support she needs. My wife is undergoing assessment too. It seems Aspies have an affinity for each other.

I’ve got a little lad with global developmental delay who’s awaiting tests and assessment for autism. Wholeheartedly agree with Ninfan – so difficult at times, and easy to forget that you’ll get an entirely different response from the one you expect. I tend to forget that Josh will often just mirror whichever approach I use, so say for instance he does something that winds me up, (this usually involves getting ready to go out somewhere), if I attempt to remonstrate with him, he just gets even more resistive and argumentative in return. It’s almost like there’s no ‘off’ button, he just can’t climb down from his position. He will (9 Times out of 10) refuse to do what you ask him to do initially, and the more frustrated you become, the more wound up he becomes. The most effective solution is to ignore or dissatend his behaviour, but it’s so frustrating and difficult at times.

thoughtful words. Elder lad, ASD, has been a roller coaster really, took a while to get a diagnosis but after that, support at school, and also additional support for us – techniques to manage things. Now doing very well, good peer group, great ambitions.

Suspect that I, like I suspect my father, share some ASD traits as well, so it’s doubly useful to absorb this material.

he just gets even more resistive and argumentative in return. It’s almost like there’s no ‘off’ button, he just can’t climb down from his position. He will (9 Times out of 10) refuse to do what you ask him to do initially, and the more frustrated you become, the more wound up he becomes. The most effective solution is to ignore or dissatend his behaviour, but it’s so frustrating and difficult at times.

This does not change. Not in his head. First response is normally refusal, it buys time to process without feeling pressured. if you then apply pressure it’s annoying and frustrating as that option is no longer available to you….

Barnsleymitch – the way I’ve found forward on that is to give them, shall we say, closed options

So with my youngest (who lives with me full time) bathtime is a *real* issue, (very much in the PDA pattern of ignore, distract, negotiate, refuse, outburst, violence, meltdown) – however if I play her by asking on the way home from school what time she will be out of the bath, so I can make sure her dinner is ready when she gets out of it.

she feels she has ownership of the decision without ‘losing’, she is no longer trapped.

Of course this is type of parenting trick that you’d be using on a five year old – ‘do you want your bath before or after the muppet show?’ – the debate has been moved from whether or not you’re going to have a bath, to what time – you don’t expect to still have to do it with a thirteen year old…

Eldest (sixteen) is Aspie with OCD and self harming, real roller coaster in the first year of her A-Levels so far, have just agreed that she can leave school outside of lesson times rather than staying there for directed study, as she was whipping herself up into a state – just found out that she’s got home early this afternoon, but wet herself…

What has come as a big surprise to me is the amount of females diagnosed with ASDs – I had always assumed it was much more of a male issue. Then the little girl our two have known since birth (now coming up 5) was diagnosed this year (although it was quite clear she was on the spectrum for the last couple of years) and I have taken a much more active interest in the condition.

🙂 No such bath-hate problems here.

My son (just 3) has no grasp of socially acceptable sleep times. We woke at 4am last week to the sound of running water. He had got up, ran a bath to the brim, stripped off and got in. Didn’t think to turn the tap off. Luckily it is a mixer tap, and he didn’t mess with the thermostat.

The bathroom was flooded, and we were besides ourselves with the thought of what might have happened. He was as happy as the proverbial pig!

Now got locks on the door, much to his sisters’ annoyance.

It can be a living nightmare sometimes, and the best fun in the world at others times.

I may be teaching people to suck eggs but…

When my wife taught autistic children she used to create little charts for each daily activity and give plenty of warning when they were going to happen.

So she’d have a series of pictures for an activity and would firstly warn the child they were going to have a certain activity in a specific period of time. As an example; “we’ll be going out to play in 5 minutes”

the chart then led the child through the preparation and the activity;

so a picture for ending current activity
a picture for tidying up
a picture of going to the loo
a picture for gettign coat etc
a picture of linign up to go out

breaking a task down into small steps and always following the same script meant she had far fewer issues with kids becoming anxious when they couldn;t work out what happened next (they coudl just look at the chart) or felt that things were out of control (they weren’t because the script was being stuck to).

Anyway, I admire anyone who’s a parent to an autistic/aspergers child (wherever they are on the spectrum) – it must be a constant dancing around their condition to help them (and you) navigate through daily life.

Yeah, can be massively rewarding.

eldest pulled off amazing results at GCSE (five A*) – but we wonder if she’ll ever be able to live on her own, god help us when boyfriends come on the scene and the first breakup happens…

youngest is top echelon of the top set in nearly all her subjects, but can’t wash her hands 😕

wwaswas makes good points about pictures

It’s frustrating and fulfilling in equal measures, in my experience. On top of possible autism/add, we have his developmental delay to deal with. One positive to this is that he remains my little lad for longer, but the social ramifications for him are heartbreaking at times. We’re awaiting the decision on special schooling for him – if we can get him into the school we want for him, this shouldn’t be as much of an issue, as he will no longer be seen as ‘obviously different’ to his peers.

the social ramifications for him are heartbreaking at times

Constructively, remember that that may well be more of an issue for you guys than it is for him!

We’re awaiting the decision on special schooling for him – if we can get him into the school we want for him, this shouldn’t be as much of an issue, as he will no longer be seen as ‘obviously different’ to his peers.

I have spoken to guy today whose wife is a teaching assistant, dedicated to an Autistic child in a mainstream school. The other kids have not been made aware of his ASD, but do know that he is different. They all want to play with him all the same, so much so that he has been overwhelmed. The teacher literally has to timetable who can play with him at any given lunchtime. It is limited to 2 playmates, on a rota basis.
Quite a nice story, I thought.

For me it’s all about planning.

When I lived alone it was easy, I had a slot for everything. Work could not be predicted too much so I often came home exhausted, just flopped out in front of the TV to switch off, sometimes forgetting to eat.
Meals were well regimented. I would eat as soon as I got up, at 1pm and between 5-6pm on weekdays. A little looser on weekends, but only in that I wasn’t sure what time to have lunch so often wouldn’t.

Now I have a wife and family it’s all very very difficult. But yes, planing and awareness of the plan is crucial.

god help us when boyfriends come on the scene and the first breakup happens.

Our daughter had her first breakup last week. She was off school the whole week to give her time to deal with it. She seems OK. after the initial shock she was OK, then she was upset an confused as her weekend pattern had changed, but now she seems better, quite black and white thinking really.

It can be very difficult however to manage what’s appropriate behaviour, boundaries and finding a teenager who respects them and doesn’t take advantage.

wwaswas

Exactly how we deal with my son, Boy2.

I’ll inform The Wife that we shall be watching Horizon on iPlayer tonight.

Group hug! 8)

I think the whole mainstream vs special needs schools is such an individual choice.

There are academically able children who cannot cope with mainstream school because of the number of children/randomness of the day/etc.

Equally, there are children on P levels who cannot cope in mainstream even with help because they are unable to work at a level anywhere near their peers.

Both benefit from a more, errm, tailored approach in a special needs school.

I think the decision as to whether to try and persevere with mainstream or accept that their child is ‘different’ enough to need alternate provision is one of the most difficult that some parents face as their children start school and progress through KS1 into KS2 and I dont; envy them.

Watched most of the horizon programme last night. it did focus a lot on those who are very obviously autistic, which was a little disappointing. I guess from first hand experience of seeming ‘neurotypical’ but existing in a world quite some distance from it, same as my daughter, people expect you to be ‘normal’ despite being informed that you have particular traits and need to be handled slightly differently.

That said, all information publicly available about autism to educate those not in the know has to be a good thing.

My wife’s cousin has autism (and dwarfism, and more thrown in for good measure!).

She attended the local primary school, who were very good with her (extra help on hand, and a very good support structure). Come secondary school however, she has gone to a specialist school.

She’s possibly the only person I know who could make an entire funeral congregation laugh, including the immediate family of the deceased.

[To the deceased, in a loud booming voice]

“Wake up you silly bugger, I want to play football with you. And eat some cheese and biscuits. Wake up please. Now.”

😀

I think the decision as to whether to try and persevere with mainstream or accept that their child is ‘different’ enough to need alternate provision is one of the most difficult that some parents face as their children start school and progress through KS1 into KS2 and I dont; envy them.

Ours is in mainstream school. well, her second mainstream highschool. In S3 just now.

First school refused to follow up our concerns and claimed she was just a bad kid, not interested and generally resistant to education. This was not the case, her report cards suggested that with some teachers she was top of the class, with others she did not work.
Their solution was punishment based.
We removed her from the school.

Now we have a reduced timetable in the new school, selected timeout periods and regular meetings with specialist staff and the educational psychologist.

All in all, she has an attendance rate now of about 75%, which is not bad at all. The school have learned a lot and are very keen to accommodate her needs including additional training for problem staff.

I’m glad you’ve found a solution that works for your circumstances lovewookie and that the current school has been so flexible – I do worry that with increasing numbers of academies and free schools that opportunities for this approach will be reduced as, even with you controlling your childs budget now, children with special needs often cost more to educate and, sometimes, are seen as lowering their pass rates and thus league table positions.

I should say that my wife is a deputy at a special needs school (and head designate at another) so my view of education has been from that end of the spectrum although she works closely with a number of schools on their inclusion policies and provision and would always look to work with parents to provide the best solution for each child.

Inclusion seems important to this school. The other was a new academy which took the attitude that if you can achieve, they’ll push you, if you are unable to they’ll cast you aside.

We were going to home educate her (didn’t go too well though) as a result of her really quite awful treatment, but the education officer gave us lots of options and she chose her new school.

Home schooling didn’t work. this was explained to us as home is home, a place to relax and chill. Not school. School is for school work.
This means she’s not great at doing homework at home, but does it in her free periods at school (she has free periods instead of modern languages and PE)

Home schooling didn’t work. this was explained to us as home is home, a place to relax and chill. Not school. School is for school work.
This means she’s not great at doing homework at home, but does it in her free periods at school

Mine stays after school in the library till about 4.15/4.30 and does it there, works well. We considered home schooling too, after a long and difficult bout of school refusal with mum, and after moving schools to no effect, but I took over and persisted with dragging her to school (literally on many occasions) till she got over it – personal opinion, backed up by CAMHS, was that peer interactions and having to function in society is one of the the most important parts of school as an “education for life” even if its incredibly difficult for her, withdrawing from this would do more damage than good in the long term. Have seen real improvements since.

personal opinion, backed up by CAMHS, was that peer interactions and having to function in society is one of the the most important parts of school as an “education for life” even if its incredibly difficult for her, withdrawing from this would do more damage than good in the long term.

Absolutely agree.
Ours was discharged from cahms as she didn’t need any more assistance. They’re coming back on board at ours and the schools request. There really is a hell of a lot of support out there for both kids learning to cope with autism and the parents.

Just waiting for dla and care funds to be approved, we’re skint from all the extra bits we need to do to keep a happy and coping household.

Working as the AHT of a Specialist C & I school has been more rewarding than anything I’ve ever done.

Another dad here with an autistic son. It can and has been difficult but in the main wonderful. At times I think living in his world would be lovely. Hello to all the other families living with additional needs.

1 shed.

Boy2 is due to go to secondary school in September.

He is at a main stream school now that has an autism unit and language and communication unit. He’s in the language unit, his autism spectrum needs are not high enough to be in the autism unit. Borderline diagnosis I suppose.

The secondary school has a full time autism unit, only one in the county, and a half way house unit that will suit him perfectly. He also has a statement of education needs. Which means that his school will have to accommodate him and his needs. We were resistant to the statement early on, we didn’t want the perceived stigma that may have brought, but that was our fears and not what was best for him. Since it has been in place it’s worked perfectly for him.

The school, teachers and support staff have been fantastic.

As the Dad of three ostensibly normal kids, and knowing the challenges that they represent, I can only sit back and profess my admiration of people who cope so well with a whole other layer of additional issues. I’ve spent time recently looking after people with fairly profound genetic problems, and spoken with their parents at length, and I am amazed and heartened by the ‘Well we just got on with it’ approach which occupied the next 40 years…

I’m a bit old to have heroes, but you’re pretty close.

😳 for me and my wonderful wife, it is mainly about just getting on with it. What else can you do? To everyone on here, you’re all **** heroes!

It’s on again tonight, BBC2, 11.20pm.

Life’s not easy having an autistic child you can never switch off and always have constant concerns, worries for what the future holds, however this is made far easier and a big relief having him in a Special Educational Needs school where he’s thriving and doing do much more than he ever would in a mainstream school including periods in the schools residential unit each term which is also part if his education. Next week he’s off on an outward bound course for 3 days as well as an opportunity to go skiing to Italy next year.

My daughter has aspergers . She didn’t speak at all until she was 4. We were very lucky that she got good support from about the age of 3 although she wasn’t diagnosed until age 6. She attended a “normal school”with support throughout. Anyway she is now 25 living on her own , although she is very socially isolated she works part time has passed her driving test etc . I am a very proud father of 2 fantastic children one of whom just happens to have aspergers.

If my daughter makes it through school today that’ll be a whole week of attendance (they’re kinda off tomorrow), which is another small victory.

For me growing up, I just had to get on with things. Was labelled stupid and slow by some of my family and some of the teachers in school as I wasn’t quick. Of course, Aspergers was not recognised in the late 70’s-80’s so that’s the way it went. When I hit 14 it all came together a bit better. I’d learned to mimic well and could predict the outcome of a multitude of social scenarios, so much so that I became a bit of an agony uncle, offering advise (!). Terms like ‘older than his years’ and ‘very wise’ were common.

Without the social stresses I was able to concentrate a bit more and found logical thought processed easy, my schoolwork improved so much I was accused of cheating, the difference was so stark.

If I had had support I’ve no doubt academically I’d have been more able and consistent, but it didn’t exist unless you were obviously autistic.

Moving on, I have A levels, a degree, a masters degree and gnats chuff off a PhD, held a steady job for the last 10 years in the same company where I can use my specialist ability to figure technical stuff out. So it’s definitely not all doom and gloom.

My memory is crap though, and I’ve had some piss poor social situations throughout the years.

EDIT: also like to add, that when I went to uni after my a levels, I didn’t know a thing. I couldn’t cook, I didn’t know how to pay my rent or what to do. I lasted about a month before going home and taking a ‘year out’
I spent that year learning what I needed to, based on what I found difficult or didn’t consider, so it didn’t happen again.

One trait for males with aspergers is that we find it difficult to remember names in social situations. I remember having a conversation with another aspie where we were introduced and chatted, then about 2 mins in, he said, ‘I’m sorry, I’ve forgotten your name’ I answered, then asked him the same.
This was the theme for about half an hour…we just laughed about it.

Autism hasn’t affected me directly but hora junior has grown from 6months to 4yrs with another little boy at nursery. Hes in every photo with hora junior growing up etc etc.

Only a month ago was his little friend was diagnosed with autism and moved to a specialist school. Far from feeling any such emotion as ‘pity’ I felt utterly depressed when I heard and whenever I think about it or see his Mum etc, well 🙁

It is difficult hora but the kid must need more support than can be provided in a mainstream school or has a lot of trouble coping in a class with 30 children.

When he’s alone with your son there’s far less stimuli then with 30 kids all talking and being busy around him. For some people with autism coping with lots of external noise and motion is very difficult. Perhaps this is the case with this child?

I don’t think any parent *wants* their child to be in a special needs school but they *do* want what’s best for their child and sometimes that’s in a small group with lots of support (most autistic classes my wife has taught have been 5-8 children with at least 3 classroom assistants plus a teacher). For some when their child gets to school it really brings home how different they are to other children and there’s almost a grieving process as they come to terms with it (clearly this varies from family to family ).

In this case I think you should be offering the kids parents as much support as you can and burying your own feelings a bit deeper. Your son can still see the boy in circumstances that are easier for him to cope with.

there’s almost a grieving process as they come to terms with it

This has been the case for my wife, coming to terms with our daughters autism. Even 6 month on from diagnosis there are still moments where she blames herself for it even knowing how irrational that may seem.

It annoyed me a bit that the horizon programme actually confused matters a bit more and seemed to want to illustrate aspergers by talking to a child who has slight motor problems, making them seem ‘different’. I can’t help but think this will not help understanding of that particular condition for those of us who appear kinda non-autistic.

Having a teenager, diagnosed with aspergers, just about to take his GCSE’s this summer, there seems to be focus on child autism as in the Horizon programme, but to us as a family it has always been the movement into the adult world and independent living skills, after all we wont be around for ever!
The educational statement finishes at 16 here and it is taken over by Careers Wales we are looking at local colleges/ 6th forms where the support structure is in place.

Far from feeling any such emotion as ‘pity’ I felt utterly depressed when I heard and whenever I think about it or see his Mum etc, well

Is there any way you could arrange for little Hora to see his friend presuming he isn’t. I’m sure the child’s parents would love their son to keep seeing his friends from his previous school, unless the social hierarchy of parents dictates otherwise due to lack of understanding & knowledge regarding autism and how interactions in children’s parties can effect an autistic child should an invitation not be accepted by the child’s parents. My son found it very difficult to cope in children’s parties however enjoyed having certain friends he knew well over or viva versa. Also with thanks to understanding friends they made sure our son had a quite area he could take himself off to to either play a Wii game it watch a DVD.

Really happy little Hora’s friend or photo buddy is getting the support he needs.