Son diagnosed with Aspergers last week. Advice for parents very welcome

(41 Posts)
willyoulistentome Wed 30-Jan-13 09:12:09

My DS1 has always been difficult, tantrumming etc, but up to recently I thought he would 'grow out of it'. I suppose I buried my head in the sand a bit. It's amazing what you you get used to, and you assume is normal. I suppose we sort of came to our senses this year and realised that in comparison to his peers and his 7 year old brother, he was not developing as he should, and that we were finding this parenting lark so much harder than everyone else seemed to be... because of DS1. I spoke to the GP and school about it just before Christmas. I wrote down everything that was worrying me. After one visit with a child psycologist just me alone to discuss him, and one visit with DS1 by himself, she has given us a diagnosis of Aspergers. It's obvious now that he will not grow out of it, and that in fact it will in all likelihood get more difficult as teenage years come along. I feel so sorry for him. I have been so horrible and shouty with him. He is really starting to struggle academically. I fear for what is in store for him at secondary school. I fear he will never get a job. I have a (40 ish) cousin who has severe Aspergers, who has been sectioned in the past, never had a job, girlfriend, or managed to live independantly. His AS is so severe that it in fact 'looks' nothing like DSs, so it didn;t occur to me that that was what was the problem with DS.

Dh is in a bit of denial - has not yet read the report...Doesn;t want it on DS1's 'record' as if it is a stain on his character. I am weepy at work and unable to think about much else at the moment. I have ordered the Tony Atwood book, and trying to find out as much as I can.

Anything anyone can tell me to reassure me, will be very welcome right now.

ivebeenupsince6 Wed 30-Jan-13 10:35:24

Hello, not here to reassure, but am going through something similar myself at the moment...so more of a hold hands..

PostBellumBugsy Wed 30-Jan-13 10:47:47

My DS is HFA / Aspergers (HFA - being high functioning autism). He is 13 now & was diagnosed aged 7. I have to confess I was relieved when I got the diagnosis, because I thought I was imagining his behaviour or was just not parenting properly (my ex-H was & still is in denial).

There are lots of really helpful guides out there - Tony Attwood is excellent, but possibly a bit academic. Some of the most helpful articles or websites I found were from other parents with AS (autistic spectrum) kids.

I had DS assessed by educational psychologists to see exactly what learning difficulties he did have. He is very clever, but is dyslexic, dyspraxic and has other cognitive impairments that make some aspects of learning difficult. With those issues assessed, it made it easier to get extra help for him.

willyoulistentome don't be disheartened by the diagnosis. Your DS has always been a bit different - now you know what it is. Nothing has changed EXCEPT you will now have a better idea of how to help him. The more intervention you can do, the better chance he has of living a "normal" life.

Lifeisontheup Wed 30-Jan-13 10:49:41

My DS was diagnosed when he was 8, he is now 16. He had huge tantrums when he was young but the teen aged years have not been worse. He goes to a special secondary school where a lot of the boys also have ASD and associated conditions. He got 9 GCSE's at grades A-C and is now doing 3 A levels, the school say there is no reason to suppose he won't go to university if that is what he wants.
It has been a long and ,at times, an uphill struggle and he still has to be managed differently to his siblings but is reasonably independent and travels to school on public transport and can be safely left alone in the house although I don't leave him alone overnight yet.
Please do not despair, for us, the years until he was about 12 were the most difficult but he is a cheerful and affectionate young man now.

willyoulistentome Wed 30-Jan-13 11:17:44

Yes, I am relieved that I have not caused his issues through crap parenting, DS2 is a deam child in comparison, so I guesed it wasn't JUST me being an awful Mum, but i do hate myself for not handling him well in the past.

I have been trying to google as much as possible about it, but phrases like, 'being bullied at school', 'depression' etc, keep jumping out at me and making me cry at my desk at work in my lunchhour. Keep having to hide in the loo for a cry at the moment.

I read about all the famous succesful Asperges sufferers, but he is having such problems 'getting' things at school at the moment, home work is a total minefield and tantrumfest!! I can;t ever imagine him passing any exams or being able to get a job in the tough job market out there.

I am having a meeting this afternoon with the Head at his school who told me yesterday that her son is also has HFA, and not to be disheartened.

I am trying to write a list of questions for her.

Can anyone give me an idea of what I should be asking? and what I should be asking school to provide?

We had been looking at secondary schools for the year after next. I guess I will have to look again with a whole new perspective this stime.

PostBellumBugsy Wed 30-Jan-13 11:30:12

Yes, it was the comparison with my 2nd DC, that forced me to think that something was not right with DS.

Don't dwell on the negative stuff. Some kids get bullied at school - they won't all have Aspergers. Some people get depressed too - but they wont' all have Aspergers either!

Things to ask the Head:
Would she recommend a referral to an educational psychologist to check for learning impairments? Again don't be alarmed - it is better to know these things.
Can she organise an IEP (individual educational plan - I think)?
What support can she offer him at school?

Homework was a ghastly nightmare in my house too, when DS was at primary school. He is also now at a special secondary school & homework issues have disappeared.

He has got less tantrumy with every year that passes, as he gets better at expressing himself. He is still crap at working out what he is feeling, but he is better at trying to understand what he is stuck with, or has a problem with.

I also tell everyone. Every extra curricular activity he does, every holiday club he goes to, every childminder we have - everyone. I have a basic DS info sheet that I give to people, giving them his major stressors, things he struggles with & a few tips on how best to engage him. We've had a few disasters, but we've also had some really positive experiences too.

sunnyshine Wed 30-Jan-13 11:40:40

Hi can I ask what the major things were that made you think this. I have a friend whose daughter I think has aspergers but unsure as I don't know any one else with it. Thanks in advance.

willyoulistentome Wed 30-Jan-13 11:49:49

Thanks so much for the advice, Bugsy. I'll add these to my list. He has not been bulied so far, but is only in Y5 of a small country primary. He is very quiet and keeps to himslef at school. The school was really surprisd to hear the issues we have at home, as he behaves fine at school.

Is your sons special secondary school only for ASD kids, or is it mainstream , but with special provision for ASD?

Also, re your other DC. If your son was diagnosed at 7, at what age did you explain to the other DC about his issues? My DS2 HATES, HATES, HATES DS1, as he is constantly picked on and thumped by him. I think it would really help DS2 to know what's going on, but the head suggested DS1 is too young to be told about the diagnosis just yet. I don't feel it's fair to tell the 7 year old without the 9year old knowing it himself.

So far I have only told the Head and class teacher.

Lifeisontheup Wed 30-Jan-13 12:06:03

My other DS is two years older so was a little more patient but still got fed up. It helped when he was doing physics at school and I explained as the brain was an electrical circuit and sometimes things misfired (disclaimer: I know nothing about physics) and that seemed to make sense to him.
The school he goes to is an independent school but with lots of boys whose fees are paid by LA's. They have many ASD boys but also those with other conditions.
It might be worth seeing a SALT as my DS has a specific language disorder too which is apparently common with children with ASD. It affects his processing of language not his speech and has improved brilliantly with weekly sessions with the SALT at school.
It all made sense when we realised why he couldn't do as he was told as he couldn't process the instructions. It made things like maths tests with taped questions impossible as he couldn't process the question quickly enough. When he changed schools he went from getting 23% in Maths tests to getting 96% which did wonders for his self esteem.
Sorry this is long blush

willyoulistentome Wed 30-Jan-13 12:07:53

Major things were refusal to join in with groups kids playing, extreme shyness- so basically social interaction. . He will not join any sports clubs or extra curricular activities outside of school, e.g football although he LOVES football. He gets obsessed by a subject and can talk of little else. His conversations are very one way, he cannot be guided away from his topic - the obsession of the moment.

He has no comprehension that other people's opinions/wants/needs are valid and just as important to them as his own are to hm. Finds it VERY difficult to compromise. Will almost always break his end of the compromise/deal. Still can't 'share' at age 9.

He cannot play co-operativeley. Everything has to be on his terms, or he gets very upset and /or violent.

He hates change, he struggles in 'transition' periods e.g- arriving at home after school or DH wanting to stop playing football in the garden, me asking him to come off the DS or computer. These seem to be flash points and very frequently result in a screaming rage and violent opposition. ( DS2 hides under the table at these times, nowadays!)

Can't seem to get himself dresased or ready for school by himself, although my 7 year old can. I have to nag and nag and nag for him to get dressed, eat breakfast, do teeth, get shoes and coat on etc. He needs to be told and nagged for every single step. Often end up taking hm by the hand and leading him to his shoes and sometimes evenhave to get him dressed. He CAN do it, but only if he wants to do something, i.e going to a football match with DH, but certainly not because I want him to.

He is able to read a text out loud fairly well, but if asked, cannot tell you anything about what he has just read.

He seems to seek 'sensation'. he claps very loudly at random times, makes a kind of bellowing roaring noise, when excited, goes rigid with anticipation or excitement.

PostBellumBugsy Wed 30-Jan-13 12:08:50

My son's secondary is for additional needs, so kids there have ASD, dyslexia, ADD, ADHD etc. I was really worried about it, but DS is flourishing.

I told everyone as soon as I knew. DD would only have been 5 at the time, but I explained it in very, very simple terms. Telling everyone made my life easier. It stopped all the judgey comments & unhelpfulness from my parents & from everyone else too for that matter.

I don't cut DS any slack though. He needs very firm boundaries & consequences. I have learnt to never make an idle threat & always follow through. So hitting DD or anyone else or any other unacceptable behaviour, results in an immediate loss of privileges (tv time, use of PC, use of mobile phone, use of PS3 etc). We have got to the stage now, that I only have to make the threat & he will stop - because he knows that I will follow through. He actually prefers that (he told me he likes to know where he stands & what the rules are) & one of the reasons he likes his secondary school so much, is that they really focus on consequences.

Hope that doesn't sound boasty - it isn't meant to and it has taken a while to get to where we are now. I got the tip on never making idle threats & always follow through from one of the CAHMs team who visited and helped me make coping strategies when DS was first diagnosed. It might be worth asking your GP for any support that can be offered from that side too.

PostBellumBugsy Wed 30-Jan-13 12:15:56

Aw willyoulistentome just read your post about your son's Aspie characteristics & he sounds so similar to DS.

Another tip I was given, was to give very few instructions at one time. So the morning routine, almost had to be one thing at a time. I created a "what we do in the morning" picture board, which worked well when DS was younger. So it showed all the activities he had to do to get ready for school. Once he had the routine worked out, it was great. He is now always ready before DD!!!!

He has learnt that being organised is a good coping strategy, so tends to be a bit anal about getting everything set out so it is ready for the next day, or whatever we are doing next. He loves timetables & structure, so the more of that he gets the better!

Lifeisontheup Wed 30-Jan-13 12:19:50

That sounds just like my DS, he found reception and year 1+2 very difficult because there isn't a definite structure and there is lots of learning through play.
He found YR3 better because they had a timetable on the board each morning and a specific seat to sit in. He learnt to sit at the front so he wasn't distracted by other children not following the rules.

He once had a spectacular meltdown at aged 8 when they had an activities week as a treat at the end of term, he couldn't cope with the uncertainty.

Like PostBellum I have found very firm boundaries worked best and strict routines for bedtime, lists for what to do when he gets up etc do help. All instructions broken down into simple commands with no 'fluffiness'. Even now I won't give him a stream of instructions as he'll just get overwhelmed and not do any of them.

NoPartyDay Wed 30-Jan-13 12:27:04

"Be Different" by John Elder Robison is a great book with practical advice for Aspergians and their families
He reccommends the books
What Everybody is Saying by Joe Navarro
You Say More Than You Think by Janine Driver
to learn social skills/non-verbal cues that Aspergians find challenging

He reminds us that discovering and developing the often remarkable and unusual gifts that Aspergians have is important."When you're a kid, people make fun of your special interest When you're a grown up though your special interest makes you the expert-the go to guy for whatever it is you really love"

willyoulistentome Wed 30-Jan-13 12:28:36

Bugsy - Does your son have to travel far to this special school? Does the LEA pay for your son to attend? My DS also seems to have big problems paying attention ot focuing on thins. The professional we saw said he may well have ADD as well as AS, but this has not been fully explored yet, so I can;t say for sure.

Yes, I do recognise that I am not always consistent in myhandling of DS1. I must tighten that up.

I have noticed that he does better when I stay calm, which has not ever been easy, when I can't leave the two boys alone without DS1 attacking DS2 and hDS1 basically never doing what he is told. Last year I started working FT again after a few years of PT. I am basically knackered with the work, and have to come home and start dealing with DS1. I have tended to have a very short fuse with him and his behaviour.

Lifeisontheup Wed 30-Jan-13 12:32:49

Whereabouts are you based willyou if you don't mind me asking?

Lancelottie Wed 30-Jan-13 12:36:56

If it's positive stories you'd like and because I'm bursting with pride at DS1 today

DS1 has had a statement (i.e. entitled to one-to-one help) since he was 10, so fairly hefty extra needs.
He goes to a mainstream secondary with a specialist unit, integrating into the main school wherever possible.
He's never been bullied at secondary. He has struggled a bit with lack of interaction, but now (yee-hah!) has a group of oddball friends.

And (drum roll) today he went to the dentist, on his own, on two buses, and talked to them about his own treatment.

I think what I'm saying is that given a correct diagnosis and a suitable school, it may be that things will get better not worse for him through the teenage years.

Certainly quirky, Aspergers, hard working, shy DS1 is a bloody sight easier than bolshie teenage DS2 right at this moment.

willyoulistentome Wed 30-Jan-13 12:37:02

Lifeisontheup - my son also hates it when things are different to usual at school. He hates things like 'Children in Need' or home clothes days fundraisers, when they all come in looking different. He hated having to dress up a as a Viking when that was the topic in Y3. He never wants to do anything like this and will refuse to dress up and just goes in in school uniform.

Earlier tis year the class had a residential at an outdoor activity place. 2 nights away. He came home in PJs, after lying to the TA that they were troos, his toothbrush had not been used, not his soap and flannel, kecks not changed. He had several major meltdowns the weekend he came home and was able to relax. They are due to go away for a week in Y6. He is dreading it, and I am dreading him coming home from it. So major doubts. Will be speaking to the Head about it when I meet her today.

willyoulistentome Wed 30-Jan-13 12:37:48

I'm in South Oxon.

Lancelottie Wed 30-Jan-13 12:39:50

Oh, I would second (third?) the list-with-pictures method of getting things sorted in the morning.

'Have you done all of your list? Good.'

It really beats the previous 'Have you got clothes? Come and eat breakfast, then do your teeth. No, not until your socks are ON, I didn't mean that. And your pants. Put the book down. Not in the cereal... '

willyoulistentome Wed 30-Jan-13 12:40:13

Lancelottie. That sounds very positive! Thanks.

We are a bit rural here, so I have a choice of about 3 seconday schools, and if you take into account logistics of getting kids to school and me getting to work, really only 2.

willyoulistentome Wed 30-Jan-13 12:42:54

'Have you got clothes? Come and eat breakfast, then do your teeth. No, not until your socks are ON, I didn't mean that. And your pants. Put the book down. Not in the cereal... '

yes,yes,yes,yes - every bloody day!! You made me laugh ! Will draw a list TODAY!

PostBellumBugsy Wed 30-Jan-13 12:46:25

Shares pride with Lancelottie - good on your DS. smile

I've struggled a bit with getting LEA help. DS is not particularly disruptive & is clever. Even with the dyslexia, he was only 2 years behind & in my LA, their criteria was more than 2 years behind to start qualifying for extra help. Also the primary school head was unbelievably unhelpful - yours sounds like she may be more supportive.

After a really long battle I did get an hour a week additional help for him at primary school & I am now going through the battle to get funding for the special school he is at. From what I can gather my LA is particularly tight, other parents at the secondary school have boys with less issues & have managed to get funding.

I also work F-T and think that I probably haven't applied myself to the funding battle as rigorously as I could have done, because it is usually 10pm at night by the time I get to work on it all.

DS is another one who hates any kind of dressing up day at school, he doesn't even like things like cake sales if they cut into lesson times! It has to be like it is on his timetable!!!!

singinggirl Wed 30-Jan-13 12:51:09

My DS2 was diagnosed as Aspergers in October aged nine. DH doesn't like him 'being labelled' but I am looking from the point of view that we can now ask the questions when looking at secondary schools and hopefully they will be able to support him. Since we started to understand him better, he has seemed much happier, which makes him much easier for us to deal with as well.

We haven't been giving way to him, but trying to see things that he finds hard and then giving him strategies to deal with things. A lot of his difficult behaviour is just stress at handling difficult situations, so as we ease his stress we also improve his behaviour. We too have made lists for what to do in the morning and after school, which he loves. He works his way through the list and is then very pleased with himself when he has achieved everything on it. He also used to be incredibly slow at most things - getting dressed for example. A digital watch has made all the difference there; now he times himself and aims to improve his time! Being successful by completing the list of tasks or beating his dressing time has improved his self-esteem.

I have also added some rewards that I would never otherwise have used - ten minutes time on the DS if everything else is done before school. I give a two minute warning of him stopping an activity before I actually ask him to stop, because then it is 'pre-scheduled' in his mind. We also have a family planner calendar, and I am now very strict about everyone (including DH) writing everything they do down on it - then DS2 knows what is going on each day.

He is Y5, so we will start looking at secondary schools soon, but we are in Kent which has a Grammar system, which seems to work well for many with Aspergers - since many are high fliers academically, the Grammar Schools receive a higher concentration than you might get in comprehensives, so they are used to supporting these children.

Susan2kids Wed 30-Jan-13 12:53:32

The most important thing is not to panic. Firstly you need to define what level of the condition he has. A psychologist is not entitled to make a medical diagnosis only a psychiatrist can do that....so if a child psych said after only 1 visit to your child that the child has aspergers I would be questioning the professionality of that practicioner because that's simply not enough to make that conclusion. You shouldn't write your son off on the basis of one statement from someone who couldn't be bothered to assess properly. Most children demonstrate autistic or aspergic traits at some point, this does not mean they will neccessarily continue or cannot be addressed to allow more 'normal' functioning. Nor would the psychiligust have been able to tell this in one visit. I would look for a second diagnosis from a pschiatrist (avoiding the original practice if thats their working method) and then seek specific advice acccording to the assessed functioning level of your child thereafter.

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