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Nick Soapdish

Autism

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I appreciate this could be fairly niche for a topic but does anyone have any kids with Autism?

i have 2 kids, my youngest who is 3 was diagnosed last year. He is non verbal. It’s been very hard to get to grips with it and understand just what Autism is. I’ve been able to attend some support groups and courses but not as many as my wife.

 

just wondered if anyone else was in a similar situation and if so we could use this as a support thread of sorts

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So why did I start this thread? 

This morning my son woke up screaming at 2:30 this morning. It took almost 2 hours to calm him down. He is non verbal so finding out what is wrong is almost impossible. Me and my wife often don’t get to sleep in the same bed because of it. It has caused us some issues and I know I need to accept and understand the situation better. Most of my friends do not have any kids with autism. So I thought by sharing this/startingvthis thread if anyone else was in a similar position it may help.

ive had a couple of PM’s so if you want to do it anonymously you can do that as wel, but anyone who can relate/offer advice please do

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27 minutes ago, ReturnOfTheMack said:

My nephew is autistic, but not high on the spectrum. Even then I struggle sometimes to explain things to him in a way he will understand.

In my early knowledge the spectrum is very hard to define in what is low medium and high because of other variables. If you don’t mind me asking, how old is he?

Lincoln is just starting to understand certain things we say. As he is NV if he wants a drink he gives me a cup. If he’s hungry he will grab what he wants and give it to us to open. He has a very beige diet, but eats various fruit but no veg. Even hiding it doesn’t work

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Obviously having a kid is on a whole different level, but I have recently become a manager at work with an autistic member of staff

good lad, really keen to get stuck in - but almost too keen in that he sometimes comes across to some as trying to run the show when I am not there (and I am assuming wildly this is due to his condition)

 

Being blunt to somebody not on the spectrum, I would say "focus on your own job and don't be the big I am"

but I have no idea how to manage this; Anyone been down this road?

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18 hours ago, courageous said:

but I have no idea how to manage this; Anyone been down this road?

Don't be afraid to use HR. This is actually what the generally useless bastards are actually there for.

They should be able to give you some guidance on how to handle the situation appropriately.

Edited by Chest Rockwell

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19 hours ago, courageous said:

Obviously having a kid is on a whole different level, but I have recently become a manager at work with an autistic member of staff

good lad, really keen to get stuck in - but almost too keen in that he sometimes comes across to some as trying to run the show when I am not there (and I am assuming wildly this is due to his condition)

 

Being blunt to somebody not on the spectrum, I would say "focus on your own job and don't be the big I am"

but I have no idea how to manage this; Anyone been down this road?

this is the other thing with regards to the spectrum. Granted, as I said my child is 3 and we have a long road ahead, but you get people who have Asperger's, ADHD etc also now on the Autistic spectrum. We have someone with Aspergers at my job and his behavior sounds pretty similar. As Chest said, when in doubt go to those people who are there for that kind of guidance.

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@courageous

I’ve worked in the specialist education sector for around 10-12 years or so. The first 4 years of which I supported autistic learners on varying sides of the spectrum, from that to mental health difficulties and now I oversee support plans, strategy and funding.

Like Chest said, use HR for advice and guidance, obviously you don’t want to upset him, but it’s best to know where you stand from an organisations point of view... chances are they won’t be able to state exactly, but they should have no issue with sending you off for a days overview training. Many places deliver such training all over the country, including my place.

Anyway, the best you can do is look at him as someone who has managed to apply for a job, was successful, and at a guess managed well enough, hinting that his difficulties are in regarding to communication and social nuances. I’ll post an image of the triad of impairments in relation to autism at the bottom.

Generally speaking, it’s best to be straight to the point, be black and white, avoid grey area. Don’t beat around the bush. You need to also find out the following based on observations prior to pulling him in, is he able to understand, accept and react positively to praise? This might be key in terms of how you progress.

Let’s assume he is:

If I were you, possibly spend 5 mins creating a positive and negative list of his performance. Get him in for a chat and fashion it as an appraisal if he doesn’t have one due. 

Give him a shit sandwich... Positives at the start - where to improve - finish on more positives and a plan.

The bit in the middle is your opportunity. I’d go with reassuring manager 101 approach. Explain that it’s clear he has the skills and what not, but his approach with others could be tweaked. 

Dont bring up Autism, however, if he does, fantastic as you can explain that people in the office might not be aware or understand. Find out if he’d be happy to deliver an overview to the team and that when he behaves in a certain manner, it’s not something for others to take personally.

It might help to break the tension a little bit.

Saying that, keep an eye on this as part of the target setting as it could simply be a case of not being related to Autism at all, it could simply be that he wishes to be recognised as having managerial qualities. Is there any training courses to put him on?

 

E89240BB-E40A-4EC5-967B-6364FB87E053.png

Edited by Kaz Hayashi

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Had a bit of a social media breakdown today

Yesterday was one of the worst days I can ever remember. It was his 4th Birthday. The reason why it was one of the worst days is because it really hit home yesterday how much his birthday, in his little world, is just another day. There is nothing unique about it in his eyes because he does not understand. Sure, he had presents and cards, but the whole concept of a birthday has absolutely no meaning for him.

It's not his fault, of course not. But this is the side of our son that many of our friends and family don't see and will have no idea the impact it has on you mentally as a parent. my wife put up a really lovely post for our anniversary talking about how life isn't the way we thought it would be, and this is one of the most prime examples of that.

I have a loft full of various toys and games I bought for him for him to play with. Things like Star Wars figures, the kinds of toys I would play with at a similar age. And now I know those toys will probably never get played with. I am not bothered about the money, the sadness is from not being able to share my love of Star Wars, or football or wrestling with him and possibly never will.

In a way this status is pointess. No-one will be able to take away the pain, or use a magic wand to make things better. This is our son, this is our life, but it does not stop me feeling heartbroken about it. I suppose really the only thing this allows me to do is get some feelings off my chest and share with you our experience.

I honestly do not know how she copes or stays so positive. I have a stressful job but one which is needed to provide us a home and food, but her job as a parent and carer is harder in its own way. We have been lucky they we have had some great support from our local council and the reason for that, again, is all the hard work of my wife.

Anyway, if you read this far, thank you, and sorry it's such a downer of a post. I just wanted to give you an insight into the world of having a non verbal autistic child. I love him to bits

Edited by Hannibal Scorch

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Picking up this thread as it seems there is. Few of us dealing with this. 

The app my son uses is indeed quite costly. I would advise taking direction from the SLT before going all out. 

My son is now 11 I think that’s makes him a bit older than your guys. The joy of it is it will talk for him, you can take it anywhere without pockets of pecs cards and most importantly anyone can understand what he’s trying to say. 
 

I’m currently starting the process with the Dwp over his DLA. I expect a fight.

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I work in a primary school and support a child with autism as part of my role. I work on the inclusion team so work across school with children who need various additional support. 

 

Happy to chat to anyone that may find it of use. 

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@Hannibal Scorch sorry to read that, but great that you all still do these things for him. I couldn't even begin to imagine how it must feel, but kudos to you and Mrs Scorch for soldiering on. I really hope you get somewhere with the DWP. 

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10 minutes ago, jazzygeofferz said:

@Hannibal Scorch sorry to read that, but great that you all still do these things for him. I couldn't even begin to imagine how it must feel, but kudos to you and Mrs Scorch for soldiering on. I really hope you get somewhere with the DWP. 

Thank you. We do get some support (but low tier rate, Mrs Scorch does all of that). The best change from the last post I did was getting him into a specialist school. He was at a mainstream nursery and was going to go to the school. But the staff were awful, his care plan was not often adhered to . We got a phone call for his "graduation" ceremony and they asked if we would mind him not going because they would need to have additional staff for the day (which is what his funding went to anyway). We pulled him out for the last 2 weeks, he did go to the ceremony though and we had to go to meetings with the head which led to the Senco, who was the one that made the call to us, being demoted.

Since he has started at school in September he seems much happier and the staff in the school are amazing. We have seen small improvements as well. And my relationship with him is still not much different, but he does want to do more things with me then he used to so small steps and all that (he also doesn't mind me watching some wrestling) 

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