The autism thread

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Discussion

dhutch

14,388 posts

197 months

Monday 15th July 2019
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sparkyhx said:
Large part genetic i'm afraid. ....we see parents who often do not realise they are clearly showing traits themselves, but are in blissful ignorance/denial
Nothing to be afraid of! But yes, certainly I see plenty of people displaying traits, including whole family, partnerships, where there are clear traits. Went to a wedding recently, obvious to anyone aware, but bride groom and respective families in full ignorance.

dhutch

14,388 posts

197 months

Monday 15th July 2019
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sparkyhx said:
My son graduated from Teacher training yesterday, he like me is diagnosed with Aspergers, Proud dad was there to see him. :-)
Congratulations to him, good work all!

MattCharlton91

324 posts

140 months

Friday 19th July 2019
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O.P - I wish you all the best for you and your family mate!

We have friends with autistic children (all four of them, in varying degrees of severity) and I’ll openly say, at first I was a bit predjudiced as of what to expect with them, mostly through my own lack of intelligence. But what lovely kids they are, kind, caring, helpful, funny. Obviously there are things they struggle with, but generally they are good kids, and rarely create problems, but when they do, they go BIG!

Victoria sounds like a fantastic little girl, and you sound like you’re doing a great job! I don’t think autism is anything to be worried about, especially with all the information and help on hand these days, I just think it means they need just that little bit more care and attention, and hey, that’s no bad thing right?!

As long as your little girl is on the whole a happy, healthy kid, they’re alright chap!

wiggy001

Original Poster:

6,545 posts

271 months

Saturday 20th July 2019
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MattCharlton91 said:
O.P - I wish you all the best for you and your family mate!

We have friends with autistic children (all four of them, in varying degrees of severity) and I’ll openly say, at first I was a bit predjudiced as of what to expect with them, mostly through my own lack of intelligence. But what lovely kids they are, kind, caring, helpful, funny. Obviously there are things they struggle with, but generally they are good kids, and rarely create problems, but when they do, they go BIG!

Victoria sounds like a fantastic little girl, and you sound like you’re doing a great job! I don’t think autism is anything to be worried about, especially with all the information and help on hand these days, I just think it means they need just that little bit more care and attention, and hey, that’s no bad thing right?!

As long as your little girl is on the whole a happy, healthy kid, they’re alright chap!
Thank you for posting this, it is genuinely very much appreciated.

I must say that since creating this thread in January things are, on the whole, a lot better and more positive than back then. At the time it was all new and daunting, and I was very much going through the "grieving" stage (thinking more about what we had lost than what we had to gain).

We still have major issues at times, and things we (well, my wife who deals with it more than me) struggle with. But on the whole Victoria is a kind, funny, beautiful little girl who we are very proud of. Getting top of her class on the recent phonics tests and standing in assembly to say her part in a story about dinosaurs are 2 recent examples of things we couldn't see happening 6 months ago because our vision was so clouded by the negative. It helps that we've been lucky to send her to a school that, unknown to us at the time we applied, is very accommodating and proactive to Victoria's autism.

In January I asked my wife a very difficult question: would be take away Victoria's autism if we could. I said no but my wife said yes. Now we are both in agreement that we wouldn't have her any other way.

If anyone reading this has had a diagnosis recently just take one thing from this thread - it only gets easier and it's not as bad as it seems now.

thepeoplespal

1,621 posts

277 months

Thursday 1st August 2019
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solo2 said:
kurt535 said:
solo2 said:
kurt535 said:
Im guessing you also have a ILP for him? WHat has the school said? Are they an academy or still cc?
I've had zero help or assistance since diagnosis. What's an ILP?

His school is an Academy
Ok, there's the problem. Academies are notorious for dragging their feet on this. My advice to you is to gather your evidence and email the school for a meeting with the SENCO officer to discuss your concerns.

Following the meeting, email them back with what was discussed. Note and log times dates and issues you had. DO NOT rely on telephone conversations that they can later on deny.

If your child is evidencing SEN/EBD issues then an Individual Learning Plan needs to be put in place by the school asap. The fact the school has not done this following a diagnosis is very wrong on their part and, potentially, illegal.
Ah right. I think this might be where he does not qualify - I'm not sure. He is doing well in classes and is in top sets for most things but he gets easily distracted but others and then it is hard to re-settle him and get him back to working. Lots of time is wasted in lessons because of this for him at least He seems to achieve good grades with minimal effort and they have let him slip by as he is meeting their targets. The school only seems to care about meeting the Government targets and not about the kids, they say they do but it's obvious they don't now he is my second child to go through this school What he is struggling with at school and this is where I feel and EHCP might help - and please feel free to correct me if I am wrong but he needs help with his social interaction and dealing with communicating with others whether that be another pupil or teacher.

A couple of weeks ago he was in a foul mood due to an altercation with other students that had just occurred during lesson changeover and the Assistant Head came around the corner and greeted my son asking in a throw away comment was he ok, the sort of comment most people accept as nothing. He absolutely let rip and verbally at the Assistant Head in front of other students whilst the guy was shocked by the verbal tirade that came his way and unaware of why my son was doing it. I got the customary phone call from the Assistant head a few hours later explaining what had occurred and could my son possibly go give him an apology as he could not be seen to speak to a member of staff like that . I do agree with that but the school are well aware my son is picked on on purpose to provoke a reaction by kids in all years and yet they have done very little about it. I had hoped some extra funding might mean he could have an adult escort him between classes and teach him how to deal with other children.

Maybe I'm off on the wrong tangent here but I just want my son to have the same education other have and be able to hold down a job in later life
Coming to this fairly late, but I'd say that you wont get an EHCP given their current progress (school refusal, falling behind, mental health issues & self harm look to be needed in the mixture before able students get an EHCP in my experience), as this is normally a graduated response after a school has implemented changes (things like engaging an Educational Psychologist, Individual Education Plans, reasonable adjustments) and where these changes haven't improved things taking it further. If they haven't done any changes they should have, things like the assistant head knowing what not to do to your child. A council would expect a school to be spending at least £6k a year on direct intervention on a child, before considering a top up for an EHCP.

As an aside Sutton Council will always go for a LA Special School before an Independent, as even with a maximum topup of circa £31k that's way cheaper than an Independent that starts at £50k and can be considerably more. (Only successful argument I've seen used is reduced cost of transport making things cost neutral -if a place is available at a state funded school)

It sounds like in the 1st instance your school should be complying with the Equality Act 2010 (which incorporates the Disability Discrimination Act) and that they should be making reasonable adjustments. It's hard to make a school, especially an Academy, actually obey the law, especially a law that has no teeth (normally no damages or payment of costs for breaches- just ignominy of losing a case).

You could try doing a Parental Request for Assessment to the LA, search for"local offer" on their website for the form, that will almost always be turned down for lack of evidence (so dont worry that you dont have all of it, although try to do a reasonable job of it), but all is not lost, it typically forces the school to pay for an Ed Psychologist, which might actually get you some of the way to getting the school to implement reasonable adjustments. With the Ed Psych report you are out of the catch 22, as this can and should be used to force the hand of the school, if they dont go down the road of using it to make reasonable adjustments. This is what will be key for an attempt to get a future EHCP by following the report and getting the required evidence for another Parental Request or indeed the school doing a request themselves.

Good luck.

Biker 1

7,729 posts

119 months

Sunday 4th August 2019
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wiggy001 said:
If anyone reading this has had a diagnosis recently just take one thing from this thread - it only gets easier and it's not as bad as it seems now.
I don't have autistic relatives, but our neighbours have a boy, I think he is 16 now, who is severely autistic (not sure what the technical terms are...). We have lived here some 12 years now & have seen how he has been brought up. The parents appear to have unlimited patience & have built their lives around him. Both work & seem very happy. The boy appears healthy & happy.

bexVN

14,682 posts

211 months

Monday 19th August 2019
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We are currently in the process of getting senco to assess our son, he is 9. Whilst I would generally say he would be classed as high functioning, he is definitely exhibiting many signs of being on the aspergers spectrum.

He actually underwent assessment when he was about 3 due to very slow speech, poor speech when he did talk and not able to socialise well (and avoid eye contact) and was very routine orientated which could cause a lot of stress, yet absolutely excelling with puzzles, letter, spelling, numbers etc.

He was never specifically diagnosed at that point although it was suggested he was likely to be on the spectrum somewhere. So he had speech therapy and was put on an inclusion register at his school. We are lucky that he is in a small school and they also have students of a wide range of abilities including quite severely autistic children.

My son has progressed well. He excels at school, his maths ability is way above his age, as is his reading, vocabulary etc etc, in fact for school he is a model student. It is at home the other side of 'the spectrum' comes out and can be hard to know how to respond to his needs, though we are getting better at knowing how to help rather than worsen a situation (but it isn't easy!)

Our main reason for asking for help is more for us than our son tbh. We couldn't be more proud of him for so many things and he is very loving but we think he still needs more guidance socially. This will become more important when he moves to a secondary school that will be much bigger and more chaotic than what he has been used to.

Life is tough and whilst academically he will do amazingly I really worry for him socially as he gets older. I was bullied just because I wasn't a sheep following everyone else at school and it had an impact on me. I don't want him to become an easy target due to his naivety and sweet nature (we got him into kickboxing at an early age because we felt it maybe useful to him when he was older!)

We appreciate that compared to many parents who have children with autism we know that we have far fewer struggles and yet it can still feel very challenging at times. It really became more apparent to us after having our daughter who is almost 5yrs now and seeing how effortlessly she plays with others and socialises, how amazing her imaginary play is and is more observant to all aspects of life she is etc. Our son has never able to express himself like that.

S100HP

12,678 posts

167 months

Monday 19th August 2019
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I could have written the above about my 6 year old

MrJuice

3,359 posts

156 months

Tuesday 1st October 2019
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Great thread

An awful lot resonates with me. Our son is 5y2m now and has very recently been diagnosed with ASD. His behaviour about a year ago when he started in reception at a state primary was very difficult to manage. It put a lot of strain on my marriage and my wife ended up moving to her mum's. Son was without school for about 2 months but has been at a small independent school since November. Things have improved enormously.

I am torn on whether a small independent school is best for him (he cannot deal with too much rush, too much noise, etc.....so state primary in London would be tough) or a well equipped state primary

We are at the stage of appointing a private ed psychologist (we are struggling to get a council funded assessment done) and with that report will probably apply for EHCP (education healthcare plan). If he gets this, he will then go to the top of the wait list for any state school anywhere in the country. Obviously EHCP is not a given and is a long process

I, too, wouldn't change the autism that my son has. If he wanted to change it, that's up to him. But to me, he's 100% perfect the way he is. The challenges are challenging but in an odd way, they are good too because they make him who he is and our way of dealing with challenges are what shape us as parents.



dhutch

14,388 posts

197 months

Wednesday 2nd October 2019
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I was very lucky in that I was able to move into a small state primary that was fairly local (three classes, circa 80 students) which where able to adapt and adjust much better than the 400 strong schooling machine I was at first, but still had a teaching assistant with me a large amount of the time and a lot of support from my parents.

Luck struck again when aged 10 there was a local state funded special needs fortnightly boarding school which again was reasonably small, a class per per but only about ten per year. It times it was hell for me, especially being away from home, and also hard for my parents who never intended to send me to boarding school. However while I am sure it could have been done differently and at times less traumatically, gave me some building block for life and a reasonable set of GSCEs

Our school and education system is very inflexible, and probably not well suited to today's needs even for the main stream of students, but its even worse for someone on a spectrum somewhere. I was able to hold it together, get three good a-levels, and a 2:1 in engineering, and now aged 32 have ten years experience as an design engineer and worked up to a senior position managing small team.

My partner is a physicist who has a lot of family members on the spectrum and I've learn more about myself through that as well, some of which has been interesting, but others of which has actually been quite hard work and not necessarily advantageous, but she is also reasonably supportive and understanding and we work together like any other couple would with each others own strengths and weaknesses.


Daniel

wiggy001

Original Poster:

6,545 posts

271 months

Thursday 3rd October 2019
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Firstly, can I just say how pleased I am to see other PHers getting benefit from this thread. If it is of use to just one person (other than me!) then it was worth starting.

I've been meaning to post an update for a few days now - seeing the last couple of posts about schools has given me the push to actually do it. In my last post at the start of the summer I said things were pretty good...

So, long story short, the summer holidays were pretty tough. The lack of routine did not sit well with Victoria and although we had a great week away in Cornwall (great but not relaxing!) we were longing for the return to school. V loves school, always has, and has transitioned well between years without issue. Up until now...

We are in a situation now where V has a teacher (year 2) than doesn't appear to "accommodate" her autism at all. Seemingly little things like allowing V a tiny amount of blackcurrant in her water bottle (she will only drink blackcurrant) have been met with "it's against school policy", even though we had acceptance of this last year. We had a meeting with her teacher and the family liaison at the school and set some expectations all round and mutually agreed a few points that might help V (allowing her 5 mins "break out" a couple of times a day, giving her longer to read and understand a homework book before she is quizzed on it, sticking to known routines). All of which seem to have gone out of the window within days of being agreed ("don't worry that she doesn't have her book, just pick another one"). This was after we accidentally found out V had been hit by another child (that we believe is on the spectrum too) - the school weren't going to inform us at all!).

But I don't want this to be a negative post. So...

We have just had a meeting with a lovely and knowledgeable lady at Beams (a local charity supporting families with autism and similar). We have a meeting with the Senco on Tuesday, Parents' Evening the week after and a meeting with the special needs teacher than comes to view/assess V every term just after that. Things are moving in the right direction and although it's been a difficult few months, it feels like we are slowly starting to understand this journey we are on rather than just being passengers.

If anyone has any thoughts, comments or advice about the issues with schools, transitioning between years or anything else even vaguely related, I'm sure there are many than would benefit from sharing.

S100HP

12,678 posts

167 months

Thursday 3rd October 2019
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We have the same issue around drink. Ours won't drink water. He now has flavoured water, the school is none the wiser.

dhutch

14,388 posts

197 months

Thursday 3rd October 2019
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wiggy001 said:
.....V loves school, always has.....Up until now...

We are in a situation now where V has a teacher (year 2) than doesn't appear to "accommodate" her autism at all. .... had a meeting with her teacher and the family liaison at the school ..... and mutually agreed a few points that might help ..... All of which seem to have gone out of the window within days of being agreed.
Sounds like hard work, and it is mad that one person, who has a bit of an issue/stubbornness in terms of making minor accommodating adjustments, can cause such a ripple. I wasn't an active part of the process when I was your daughters age and I am sure its all changed since, but it sounds like your doing the right sort of things to sort it, so hopefully the school and 3rd parties, with or without this teacher support, can resolve this for you. I as I say, I had a teaching assistant for a lot of time time through primary and then was in secondary directly geared up for it, but I dont know how easy getting a TA in place it.

Even then, I have had an English teacher at GCSE that told me if I didnt like his subject he wasnt prepared to teach me. I was trying to say that I find it hard, but know I need a pass in it to continue my life, levelling with him and asking for support, wasnt happening. Fortunately I wasnt the only one he was having issues with and he didnt last long, but it did result in me not handing in my shakespear coursework until my resit!


Daniel

MrJuice

3,359 posts

156 months

Thursday 3rd October 2019
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Does Victoria have an EHCP? I read the whole thread a few days back but cannot recall specifically

Not allowing cordial sounds like discrimination. I think the head needs to understand Victoria's needs and for that understanding to penetrate all staff who interact with her. Failure to understand is going to impact on Victoria and that's not on at all.

Obviously there's a balance to be had and you'll use your discretion etc.

I hope things continue on an upward trend.

wiggy001

Original Poster:

6,545 posts

271 months

Friday 25th October 2019
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A very quick update from me. Following on from my previous post about the issues we'd had with Victoria's school I have a simple message: a couple of simple conversations with the right people can make a world of difference!

Since my last post we have had a meeting with the SENCO (who brought in another teacher we'd not met before who has knowledge in this area and I think is being lined up as a new/additional SENCO). We have also had parents' evening and then a meeting with the SENCO and an external specialist who observes Victoria each term and creates a plan for her/her teachers.

And all three meetings were very positive! We laid out our concerns in the first meeting which were relayed to Victoria's teacher and have seen an immediate transformation. Victoria is back to being happy to go to school, there are no arguments about what she drinks and her teacher is doing more to ensure consistency and routine and advising when there are changes.

Parents' evening as a result went really well and we learned a lot about how Victoria is progressing that we just don't get from talking to her. And she is progressing, which is the main thing for us (we know she is behind, and that is fine as we are all different, but she must always progress in one form or another).

So I just wanted to say that when things seem terrible and the system is against you, a rational honest conversation with the right person can make all the difference. I would also say that the support of our local charity Beams has been invaluable and we are now signed-up members. A £30 donation for membership is more than fair when they've already given us around 5 hours of their time.

We are also due to start their "Cygnets" course on monday, which is a 6/7 week course about autism which is very highly regarded by everyone that we've met that has done it. I never thought I'd need a training course to help us raise our children but what I am learning more and more about parenthood is that, unlike IT (my trade) I really can't control the direction life takes and just need to be willing to make continual adjustments to our life and our plans... not easy when you're a programmer by trade who knows that if something suddenly changes its behaviour their is a rational and logical reason that can be resolved...

bexVN

14,682 posts

211 months

Friday 25th October 2019
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That all sounds really positive. Good stuff. We can only try our best by them.

Things are progressing at our school for our boy as well. Paperwork has been processed and his teacher is making sure things get moving (after a good parents evening chat with her)
Like you, doing a course on parenting never crossed my mind but I am doing one called Incredible years and it is already helping me re conflict situations at home.

crofty1984

15,858 posts

204 months

Friday 25th October 2019
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I have a brother in law who has Asperger's. He's 22 but mostly acts like he's a little younger, spending a lot of his time in his room at his parents' gaming, only emerging for food. But he has now got himself a job in a shop. Most of the time you can't really tell, but he's not very good at "reading the room" I guess and will NOT drop a subject!

Not a real example, but say someone had recently lost a family member to heart attack, you and I might not realise it, say something inappropriate, then tell from the looks/awkward silence and apologise/change the subject. He'd plough on with "I saw a documentary about heart attacks, they say that... blah blah blah" OR "Well, on the bright side you won't have to spend as much on food".

He can annoyingly say some racist things occasionally, mainly because someone's said it online and he's decided it's his opinion, or that he's decided it's OK, so it is and why can't anyone else see his very good point? "If they can say it, why can't I?" Though I bet if he actually met anyone of another race (it's rural Norfolk) he'd treat them perfectly decently and not think any less of them. I certainly don't think he actually IS racist.

In some ways it's almost unfortunate that it's not as obvious because when he does get it wrong, it can be taken more seriously by other people and they might think worse of him, whereas if it was more obvious it would be "Oh, don't mind Steve, he's just like that, he doesn't mean it".

All said though, he really is a nice guy, would do anything for you and tries to be the best he can in his own way. I know I've not painted the best picture above, so think it's worth pointing that out. He's not got a hateful bone in his body. Which makes it MORE frustrating when he says offensive things!

bexVN

14,682 posts

211 months

Friday 25th October 2019
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^^last night hubby and son were talking about something and the year 2040 got mentioned (can"t recall the topic) anyway my name came up and without second thought son said "If Mum isn't dead then' Hubby got upset, son said sorry. I talked to him later said that I knew he didn't mean anything nasty by it and I wasn't upset (after all he could be right!) but then had to explain why it wasn't approriate to say in that situation! My son has a kind innocent heart and isn't malicious so I worry that his literal thinking will cause him trouble when he gets older

Ozzie Dave

565 posts

248 months

Sunday 27th October 2019
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For those who may be interested, we make medical rehab equipment here in OZ, and have had the electronic section of what we make designed, and is now manufactured by a local company that has a number of young (upto their 40's) guys who mostly have austism. Its run as a charity and is partially government funded. Ironically is becoming more and more self sufficient as the quality and reputation becomes better known.Their quality of work and ability to understand and in many cases exceed what you request is great. We had the ability to manufacture overseas but we have taken the decision to stay with them and hope they will become a major supplier.

wiggy001

Original Poster:

6,545 posts

271 months

Thursday 7th November 2019
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My wife and I have now attended 2 sessions of the training course I mentioned before and so far so good. The first week is very much an introduction to the course, the trainers and for us (there are 10 of us attending) to introduce ourselves. Second week was more detailed and it really ramps up from next week apparently.

What I didn't realise until we started it is that this is a nationwide programme which is developed by Barnardos. If anyone is interested in learning more then the details are here