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Menno
My three year old was diagnosed with ASD on friday. We're fine with it - he's an amazing little lad and extremely bright, however it's a bit of a minefield in terms of what we do next re schooling and so on. As 1 in 61 kids are diagnosed ASD these days then mathematically a fair few of you here must be parents to children with ASD so I would welcome any feedback
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Menno
My son was diagnosed Aspergers at 3. Had a fair few challenges through Primary 1 to 3 but he's now primary 5 and other than being a bit of a fidget it seems he is managing to self-manage how he reacts to things much better. The main manifestations for him were he needed structure and consistency in the classroom or he would sometimes lash out (throwing shouting or occasional hitting.
Main thing is to assess how severe on the ASD spectrum your son is. My advice would be to arrange a visit to the proposed school with him (or just you) to talk to them - if possible then mainstream schooling should be the option, as one professional once told me "your son won't grow out of Aspergers and will always have it, but he will learn to self manage it and his emotions /actions over time, often to such an extent it would be impossible for someone to guess he had it".
The school have been fabulous throughout and put a few small things in place for him which made a huge difference- the result being he has loved his time at school and is in the top classes for everything which is of course all you want from a child at that stage - just be happy and do well at school.
The spectrum is wide of course from mild to extreme, but the school and CAMHS will guide you. Feel free to PM
Rusty
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Last edited by RustyBin5; 21st August 2017 at 08:08.
Hi fella,
My son was also diagnosed with it at 3 and whilst it can be testing he is at main stream school with a teaching assistant and has really grown into a great young man. His main challenge is making friends but he is 13 now and love him the way he is. I will drop you my number on a pm, but any time you need to ask a question or talk about it just call.
Rich
My son and I seem to have it.
Just means we are better at some things and not so good at other things.
We do seem to plan ahead better as we need to know before what is going to happen.
^^ thisOriginally Posted by MarkB
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As others have said it is worth talking to them to see what help is appropriate for your son as ASD need vary a lot.
Schools are much better at helping out these days as ASDs and ways of working with them are better understood than they used to be, it will just be a case of finding what works for your son.
The school has been fantastic with my son and I'm happy that he was diagnosed has had the opportunity of support that I never had at his age.
Feel free to PM
From my perspective its really all about getting yourself set up with the right support network and finding out who or what is out there to help. You are certainly not alone and there are plenty of parents out there with lots of experience to help.
You may come up against some barriers within schools and the wider local authority as the quality and depth of the support can vary greatly depending on the individuals involved. But do keep persevering and do your homework the help is there.
Once you've got that support network its then really down to you and the family to work out the best way to manage your child's particular issues wherever they might be on the spectrum.
Our son was 5 when he was diagnosed and to most observers he is a reasonably well adjusted 10 year old just about to start secondary school. But with his issues being mostly behavioral it can mean unnecessarily stressful situations on a daily basis. You just have to lean to deal with it.
Thankfully he is does have any eye for detail (not uncommon with ASD children) and as such he is the only one in the family with a interest in watches and cars!
As others have mentioned if you want to chat I'm available via a PM.
My boy's on the spectrum, though the Dr disagrees and says there's not enough evidence for diagnosis, he has many ASD traits, speech & language delay and also poor fine motor skills, he's a quirky little fella, but happy.
School agree with us and are amazed he is not diagnosed when others in his year are that are much less severe.
For him it's all about not liking change and needing to explain what's going to happen well in advance.
He's now 6, so has just finished his second year at mainstream school, academically he's really struggling as he can't/won't write, but he had a fantastic teacher this year and has at least been enjoying his time at school, he made a few close friends and was apparently liked by all his class.
Unfortunately, after much discussion, we've relocated back up north, so him and his little sister need to start all over at a new school come Sept.
My son has recently been diagnosed at the age of 14.
Before we just had him down like the school as one of the kids who was easily lead, and got in trouble on a frequent basis, he also had a very small circle of friends.
A few years ago a friend of mine suggested we got our son tested as they had picked up traits, I agreed but my wife was extremely reluctant, then as time went on puberty kicked in a the traits became more noticeable, with weekly calls or trips to school to discuss behaviour.
At this point the wife agreed to get our son assessed, went to the doctors ready to battle for a referral, but she quickly agreed with no pressure from us, each of the relevant people at the hospital agreed, so it was fairly quick getting a diagnosis, although to get it in writing took several months longer.
His school have been more accommodating now we have a diagnosis. For GCSE he has been allowed to drop languages, as he doesn't see the point, and last year they agreed he could drop drama.
Our son is very bright in certain areas but if he doesn't see the point in something, then there's no changing his mind, until he has formed an opinion you can have a really good conversation with him, but once he has a few then there's no point trying to change his mind.
I'm a very spontaneous person who likes to do things as and when I think about them, our son needs plans and if times or plans altar then he starts to get agitated.
Noise has become and issue so he always has noise cancelling headphones with him, also social situations and crowds, he was desperate to go to a Green Day concert so I took him but it wasn't until the last third of the gig that he started to relax and enjoy it. He likes football matches but only for Yeovil town men's or ladies because he knows the songs/chants and can join in if he feels like it, although we went to a game and they were giving out those plastic horns you blow in to, due to the noise we had to leave where we were watching and stand by the exit, it was close to us having to leave the match.
We have a large extended family and family gatherings we allow our son to choose and he reluctantly goes to one a year but tries to hide in a corner.
Recently his temper has come to the fore, he puts so much effort in to controlling himself at school that he just bursts at the smallest things at home, his mum and sister face the brunt of it.
And the latest addition is insomnia he can go several days at a time with little sleep. But with the school holidays his routine is out of the window, when school starts again we are hoping it gets back to the normal bed at 21:30 up at 06:00 routine that he had imposed on himself during term time.
At the moment he is not on any medication but it's something we discuss on a regular basis, especially to control the temper and aggression.
It's not all bad, his intelligent in areas such as maths, science and IT and working above his expected levels. He loves animals and looks after his pets. He's polite to strangers. He is extremely honest, normally too much so that it can be seen as answering back but he being honest.
We're hoping that once his hormone levels settle a bit than things will get a bit easier but time will tell.
Best thing my school did for son was give him a timetable chart. He then knew what and when everything was happening.
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my youngest son has Asperger's and is in the Autistic spectrum, he has a statement, he is very bright, his primary school were brilliant, they understood his disposition and did everything they could. his next school made all of the right noises, said all of the right things, we interview the senco and were given all of the assurances, his old headmaster wrote to the school to ensure that they fully understood. the first year he was given an award for being the highest achieving pupil, the next year he won the same award, then it all stopped, it transpired that the school had taught him very little and he was doing it all from memory, he is now being home tutored, he has five tutors every week and is back on track. his statement budget just disappeared, it seems that there are no checks, the school can spend it on anything they want. if you home school there is no financial assistance, you even have to pay for the exams. his disposition is that he cannot easily process anything new, his brain just doesn't work like that.
OP, get anecdotal reviews from elsewhere, don't take the schools word for anything, check and see what other parents experience of how they will make it work for your child, the school has a very hard job when they have 1500 ok kids and a handful of difficult ones.
A lot of useful things are said/written already. And all are true and very recognizable.
When my son was very young, he was very 'difficult': uncontrolled anger, crying, stubborn etc. Nowadays, he's the most friendly and easy going person you can imagine. His older brother acts as if nothing is wrong with his younger brother and gives him a lot of flack for his behavior: "Go out, you're so pale. You're always inside the house. Go and start running, cycling. Do something with your spare time in stead of solving math puzzles!" On the other hand: he will help and protect his younger brother till the bitter end, I am sure about that.
An anecdote: Tomorrow, the school year starts. So the kids a had to collect their books at school ast Friday. My youngest, knowing that he needs to organise his life, has two shelves in his bedroom with all books sorted: from A to Z. A being 'aardrijkskunde' (= geography), Z being 'zomaar' (= random readers, copies etc). This year, his curriculum is expanded: German language... So the 'G' drops in... Total chaos in his system. What to do? Shift the books to the left or right? Postitioning the 'G' at the end as being an add on? Decisions, decisions!!!!
I noticed the meltdown in his system. In the past, I would have stepped forward and I would have helped him finding a solution. Nowadays, I try to 'convert' this into a math problem! "If this were a maths puzzle, what would be the problem you have to solve?" And THAT gets his brain working! "There's no single outcome here, there are more options. I need to consider what the options are!" That's the moment I leave him alone. I can not help him from that point on: his maths brain is far superior to mine. Although I am very curious how it works. When he returned to the living room he told me: "I have solved the problem, it's an expanding string of books and it's not automatically added to the last bead of the string. It lands between the others - that's the trick!
Something very obvious for us. Not obvious for him. It needs some thinking how to get that brain into action. But parents are quite good at that!
Another example: when he goes to bed, I tell him what he needs to do: "go upstairs, put your clothes in the hamper, etc...." And he always returns asking: "... and my clothes?" or "... do I need to wash my hair?" As if he doesn't listen. Very annoying when you don't consider his Asperger. On the other hand... we go to a local observatory a few times/year. There's always some sort of 'Ted talk' about space. I am not interested in this matter and when I enter the room, I press my mental 'pause' button... so to speak. My son is on the tip of his chair. And a year later, he can recite whole parts of the lecture, complete with the facts and numbers!
My wife had a project running at ASML https://en.wikipedia.org/wiki/ASML_Holding a few years back, just after we found out that my son has Asperger. She came home from her work in total joy. In her words: "I have seen his future and it is bright, very bright!!" In these high tech environments, a lot of people are diagnosed with Asperger. ASML knows that and has taken care of these people: the plant's restaurant is divided: with a normal layout, but also with small 1 and 2 person boxes for those who want to eat lunch in silence. Every employee has his own personal parking space. And don't try to park there if it's not your spot. Your car will be towed away! Employees know that and very happy with it. Lots of communication is done by the aid of Excel sheets and team leaders are aware that they have to follow the content of the sheet by the letter. A very interesting environment for a parent who's kid has Asperger, I tell you.
Menno
It will only be a problem if you let it be one.
I am incredibly proud to say this little lady is my niece.
http://www.scunthorpetelegraph.co.uk...-mental-309475
Our youngest was diagnosed at 3 and he's now nearing 16.
As others have said, if I can be of any help drop me a PM.
All 3 of our children have been diagnosed with ASD.
Our daughter, 16 has PDA (pathological demand avoidance). Our twins boys are milder but still face daily challenges. Our daughter has a statement, the boys don't. This is incredibly important from an educational point of view. Primary schools are quite flexible and will accommodate un-statemented ASD children quite well. The issue is with, at least in our area, the secondary schools. With two failed mainstream schools behind her, our daughter now rides over a hour each way in a taxi to another county to attend a specialist school in Kent.
Our daughter was diagnosed late at 11, the boys much younger. All 3 are incredibly bright, our daughter has a "non verbal" IQ of 137!! We can manage the boys quite well but our daughter is a real handful at times. Some of this may be stroppy teenager syndrome though :)
With 3 children on the spectrum, the last 5 years have been tough. My wife gave up her career to become a full time carer. She cooks 3 different meals each night because none of them will eat the same things. There are lots of visual selection lists in our house to help them make choices easier, sensory stuff everywhere. Noise is a problem, they hear everything very clearly. Each of them is different too which keeps life entertaining.
My wife has become quite knowledgable and does a small amount of voluntary work with the NAS. She has also started to write a blog on the subject.
Wish us luck for Sept as our boys will start mainstream secondary school. Their trial days didn't go too well so we are a bit nervous to say the least.
Actually, we could write a book on our experiences. If anyone wants any advice, happy to help where possible.
Last edited by Tenko; 21st August 2017 at 22:15. Reason: Spelling
When you stop and consider just how many children are going through life with these challenges from just our own little forum,it really brings home how much professional help is needed country wide .
Sharing experiences and possible solutions on here may not be the most effective way forward but my word it doesn't half help knowing your not the only one.
Goimg back some 13 years ago when our son was diagnosed finding information was really difficult.
When we were given his diagnosis we didn't really know what to think or what to do next, we thought we were getting on at point A and getting off at point B. At the time I can't remember the Autistic Society having huge amounts of information that was specific to us and so we learnt on our feet quickly.
No matter how much you read or are told you learn and modify on the go.....parents of all children asd or not do exactly the same thing.
The most important things IMO is to be consistent and to pick your fights carefully (if you can call them that) In the grand scheme of things if something isn't that important then don't make a big deal of it.
Problem shared is problem halved
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Yes twins with ASD. Ping me if you need advice.
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I just wanted to say a huge thanks to all of you for your advice and comments. Despite some of the aggro that happens on these forums deep down it's still a pretty awesome place :)
theres lots of information and support out there for children (adult services are pretty much no existent in most areas) , apart from the usual NAS etc there is a good online resource called autism connect which helps bring parents of and people on the spectrum together within each area for support and advise.
https://autism-connect.org.uk/
While you're all here, anyone got any good advice or seen any good books/resources on how to deal/explain it all to a younger sibling? My ASD lad is coming up to 7 and his little sister was 5 last week. Sometimes they play together lovely, other times the boy is not interested, wants his own space and to play alone, but his sister just won't leave him alone, wants to play, winds him up, then punch-ups ensue. We've tried to explain it all to her, but she's just not getting it.
Cheers
Brighty
http://www.autismwestmidlands.org.uk...vice/downloads
if you click on the 'siblings and autism ' section there is a list of books at the end for younger children
Cheers, i'll go take a look
"Some kids need help with certain things. If they are ASD they might need help in the classroom, if they have weak eyes they might need glasses"
Using this example sorted it for me. Also explaining that the ASD child might be BETTER at some things is a good counterpoint. It's important they know it's not all negative. My son is determined he's going to be a scientist (no idea where that came from) and I listened politely about his goals, but then he gobsmacked me by telling me all about the periodic table and inert gases. He was 6. They will surprise you in the best of ways more often than not. Just remember a word of encouragement will reap double the reward of a telling off.
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The line of work I am in is a place where having a few autistic traits is a real plus, a co-worker of mine cals it “the force”.
The only people that have trouble are the ones with no autistic traits!
We have to discover a coping mechanism for a lot of situations, once in place; no worries, just let me stay in my routine.
Locally we also have a government funded initiative called PSADU (pre-school assessment and development unit). It provides a group where the kids go a couple of days a week instead of nursery and it's about a 1:1 ratio of kids to teachers. They do coping mechanisms speech therapy anger management etc all in a focussed and fun environment. My son thrived in it and without it his journey through school would likely have been more troublesome
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My 5 year old son was diagnosed autistic around 2 years ago and is quite severe. He has also earlier this year been diagnosed epileptic and typically has seizures whilst he is asleep, so we have all sorts of monitors on him 24x7.
He is non verbal and communication is a massive challenge. Also no sense of danger, he is very mobile and an accomplished climber! He attends a special school locally, and we have found that a lot of local charities have given us a lot of help - from assisting with a specialist loan bed (he has sleep problems and did I mention the climbing) to keep him safe at night, and a travel bed, and then respite care too. The Occupational Therapists have been essential in all this too.
In fact, I am going to shamelessly plug a charity abseil that my wife is doing this Sunday - she is abseiling down the spinnaker tower in Portsmouth Sunday morning (she has a fear of heights). This is for a charity callled LUPS (Let Us Play Scheme) who arrange holiday play schemes for kids with special needs at one of the local special schools.
Here is the link :)
https://mydonate.bt.com/fundraisers/kirstygrant2
It fascinates me how these days everyone is keen to get themselves and their kids medically classified as an issue, as if that is going to really help. I'm not talking about really serious cases because that's obviously something that has to be treated but mild to almost non-existent - you'd be causing the kid more harm by having this attached to their medical records and tagged in the system than gain from whatever "help" for mild Asperger's is. Many successful people have it, some even say you have to have it to be successful.
I can see your point. But (and that's a big one this time) I don't agree with you. Parents know/feel/see that their child has problems: school, physical development, when interacting with people. All sorts of signals. And parents try to do whatever is possible for their child. They seek help. And that often turns out to be medical or psychological. Perhaps not what they hoped for, but at least it gives them a startingpoint point for the rest of their (and the kid's) life.
It has also to do with the day and age we live in! It's demanding! An example: I know a guy who lives in Israël. Like so many there, he is it he IDF Reserve (as a colonel). His first reaction when he found out that his son has ADHD: "Doctor, can he still join the army with that?" It is the environment we live in that sets the tone.
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Do you realise how long it takes to be diagnosed with ASD?
Sorry but respectfully I disagree but also understand where you are coming from. I agree that in many cases autism isn't a debilitating life sentence and that the ability to think differently can be as asset. However it's pretty uniform that ASD kids have social challenges and as a result a diagnosis helps teachers and support workers to get the most out of them and help them reach their potential. I love my son to bits and am proud of him but I don't have the specialist expertise to help him be all he can be and am grateful that others do, and his diagnosis helps in that respect
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Not sure what there is to disagree with there Ryan?
I have told you about the challenges that my son has with his autism and epilepsy, and that is not based on opinion. I am very well aware that autism is a spectrum and that others have very different experiences of what autism is, but with my son, although we have had good support, it has been very much needed and that need will continue at least for the foreseeable future
EDIT - I suspect you meant to quote sparjar?
It depends presumably but that has nothing to do with what I was saying though.
Oops sorry meant to quote Sparjar. No more beer for me tonight:)
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Well it kind of does, you don't simply rock up at your local GP, tell him there's something wrong with your child and he writes you out a prescription of Autism tablets. Getting your child "medically classified" as you like to call it takes considerable time. The Gp or health visitor is the first port of call where they will refer the child to a child psychologist. After many months they are referred again to a PDAG unit where they are assessed again. If you're really lucky 18 months is about the norm to get answers to why little Johny is kicking off in the local Asda.
So getting them diagnosed does really help as once a ASD diagnosis is given a structured process of help can be put in place.
Yes, that's the point. Everything has to be classified and everyone is a doctor. Again I'm not saying that clinically ill shouldn't be treated, quite contrary. But those who are slightly different than the norm should be left alone, like the Johnny who might be kicking off because he's a bloody kid and will stop when he grows older. Or perhaps he realises that there's nothing more embarrassing than shopping at Asda. I'd suggest taking him to Tesco's (have to start somewhere) and see if it improves. It's cheaper than getting the kid on the books as slightly mentally unstable, need to monitor, might need sectioning if declines taking meds produced by our great friends at the Great Meds pharmaceuticals. Especially now with big data and everything being integrated with everything else.
Slightly different? what, you mean just a little bit rocking and humming sat on the floor instead of full blown crazy?
You're right, those who just have a small issue need to go through life not knowing why theyre different without support.
If you're child was different to others I assume you'd ignore it?
I see a stream of consciousness situation going on here.
Sparjar you really have no idea.
My son for years was labelled as the naughty kid in the class, as time progressed more traits became apparent hardly noticeable at the time but looking back now they were there.
Then it got to the stage where he was on the verge of being removed from school for multiple small things and then someone suggested we get him assessed and straight away we got a referral the rest of the process is still dragging on although all the relevant people agree that he has high functioning autism.
He loves maths and is predicted good grades in GCSE, I've not been able beat him at chess for 6 or 7 years, and don't try and win a debate or argument with him.
But the there's the bad side it's taken nearly a year to get his hair cut as he hates people touching him, he says what he thinks and has no feelings for anything other than his pets, he has meltdowns over minor things yesterday I had a call from my wife to rush home as he was having a meltdown over a faulty PS4 controller, he has another and I have one but none of them were suitable, he kicked my wife, punched a hole in a door and trashed his bedroom he only stopped after he hit the wall repeatedly and hurt his hand.
An hour later he didn't know why he had had the meltdown as he had a spare controller, but denied hitting the door or the wall as when he is in full meltdown he doesn't know what's going on.
But then he's just a naughty kid who needs a slap and told to snap out of it, doesn't he?
Or should he be locked up in a secure unit?
I'm trying to point out to you that people in most cases don't go looking for a label of autism, they seek help because they're either having difficulties or a sibling is vastly different with regards to development and behaviour. The diagnosis of autism doesn't come at a whim, it comes from months and months of assessment.
You still haven't answered the question, if you had a child who was very different than a previous child I assume you would carry on like nothing was wrong?
We've known my son was different since he was 2, his childminder, then nursery, then school all said he was on the spectrum. He's now nearly 7 and despite seeing a paediatrition for over 4 years including child phycologist assesments, the official line is he has many autistic traits, significant speech and language delay, poor fine motor skills, but despite all that, no diagnosis given. Regardless of that, school treat him the same as the diagnosed ASD kids and attends the same special focus groups. His 2 best friends in class are the other 2 ASD kids. Getting a diagnosis is not easy, but that doesn't necessarily stop them getting the help they need.
Bollocks - sorry. The strategies and patience the school implemented and showed to my son on diagnosis has seen a remarkable change in not only his behaviour but also his overall happiness and ability to cope with situations. How you think that's worse than having a diagnosis "on his medical records" is beyond me. Parents are not keen to have something diagnosed - they are keen to have a happy child. Diagnosis is just a step towards getting assistance to making sure this is the case.
As for "you need to have it to be successful" you might need a surgeon to remove that tongue from your cheek.
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Again I'M NOT TALKING ABOUT THOSE WHO HAVE DISPLAY CLEAR TRAITS LIKE ROCKING AND HUMMING AND MORE SEVERE. Had to write that in caps so that it's clear.
When I was young I had many friends who were troublesome who in todays nanny state days would have been classified as this or that and be on meds or treatments. Luckily back in the day they were just naughty kids who were handled by their parents - which today is not allowed because nanny state. You're expected either to behave like you're sedated but if you're not you're getting diagnosed and put on drugs provided by our great friends at Great Medical pharmaceuticals (always read the label or speak with your GP before taking the medication, all T&C's apply).
Hell if I was a kid today I'd be on something for sure. Luckily I turned from being crazy adhd abdhs anaedas badass kid to a calm lad at around the age of 10. I managed to avoid getting drugged for no reason for which I'm very grateful.
What he said is true in many cases.Bollocks - sorry. The strategies and patience the school implemented and showed to my son on diagnosis has seen a remarkable change in not only his behaviour but also his overall happiness and ability to cope with situations. How you think that's worse than having a diagnosis "on his medical records" is beyond me. Parents are not keen to have something diagnosed - they are keen to have a happy child. Diagnosis is just a step towards getting assistance to making sure this is the case.
As for "you need to have it to be successful" you might need a surgeon to remove that tongue from your cheek.
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I know nothing about the subject as I imagine most don't until they are effected by it.
I do agree with some comments that their are parents out there who will push to get there kids diagnosed with it to gain benefits. I know someone personally who did this. Although disgusting I think it would be short sighted to think otherwise.
I'm not sure whether it is a genetic disorder but it would be interesting to see what the split is in terms of socio background and diagnosed children.
Interestingly and illustrative of your point when we explained to my Mother in Law about our son having some ADHD like symptoms along with a couple of other lets say challenges, her immediate response was well surely you'll get him some medication for that...still she is a Yank so can't really blame her.
No need to write in in caps....I know what you're saying.
Now you put it like that I understand what you mean, that only the bat shyte crazy kids need help and the ones that are only showing signs of naughtiness need to be treated like the good old days.
So anyway, if you're child was significantly different to a previous child would you not want to find out if there were problems?
Btw I'm sure you probably already know this but Ritalin is used for ADHD, there isn't at present a magic drugs which changes an autistic child in to one that's more socially acceptable.
Maybe have a read back at your first post again. Really no need for caps, as I'm sure everyone understood your words. You actually started off not talking about the child but rather EVERYONE (caps- see what I did there?) being keen to have something diagnosed for their child. You then went on and pointedly stated that unless the kid was extremely autistic that having this diagnosis and resultant support structure would do more harm than good. Trying not to be rude here, but how would you know? Are you a paediatric specialist in mental health issues? Please treat that last question as rhetorical as I'm sure the answer is obvious to all.
Just so you know - there's quite a bit more involved in obtaining a diagnosis anywhere on the spectrum than just toddling along to your GP and saying my kid's very naughty. Your ignorance is further revealed in your final comment on your second post, about "avoiding getting drugged for no reason". Drugs are one of many methods and contrary to your implication it tends to be a last resort. My son has never had medication even suggested as a treatment. So - maybe read your post again and in the cold light of day you will realise you took a polarising extreme stance which is why you got the response you did. I'm sure SOME parents DO seek out some kind of diagnosis just to make them feel better but not all and certainly not most. All most parents want us for their kids to have a smooth happy childhood.
Last edited by RustyBin5; 9th September 2017 at 12:06.
the term 'hidden disability' comes to mind , just because someone 'looks' fine does not mean they are - as for diagnosis and treatment/help you cannot get one without the other unfortunately.
no one wants a label but you need one to get any professional help.
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