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My Son Diagnosed with Aspergers - How to cope?

(25 Posts)
enprovence Sat 08-Aug-09 17:24:24

hello, my DS age 7 has Aspergers, we have a hospital appointment on 17th and I would be grateful for any advice.

He has not been formally diagnosed but I believe and the school that he is ASD. It has been a long road so far and I am so scared for him.

Today he went to a birthday party ( on the rare occasions that he gets an invite!) and came out looking so sad and down, he is usually so happy and thick skinned that other children picking on him never seems to get to him but today he got in the car and cried, he said they chased him, called him names and left him out. I feel devasted, and so angry.
I don't know how to help him.

There have been social interaction problems ever since he started nursery at 2.5, he is extremely bright, clever and is doing so well at school, except for the bullying.

He has many obsessions, the first real one was learning all the bus routes around Brighton and Hove and reciting them to strangers.
He has since had Doctor Who, Hornby, Super Mario and Beano obsessions.
He can recite every single Doctor Who actor who has played the Doctor since the beginning in the 60's and loves putting things in order.

I am hoping a formal diagnosis will help him get the help he needs and would be grateful for any advice.

PeachyLaPeche Sat 08-Aug-09 18:04:41

A day at a time, with great gentleness for everyone in the family especially yourself

A diagnosis or the realisation of one is a time of brereavement with the blessed differences that we can still hug our child. the steps and a great many of the emotions- grief, anger, fear, guilt- are the same though.

Your poor ds, its so hard when other kids are mean.

There are things you can do- the NAS website has lots of advice on issues if you search through, and resources such as can be excellent for actually maing changes.

Have you got a copy of the bullying policy from the school? ASD kids seem very vulnerable and certainly my 9 year old has had big problems. Again the NAS were a help, but kidscape iirc had fantastic advice

Is he on the register of special needs?

cornsillk Sat 08-Aug-09 18:09:13

How awful for your ds - children can be so mean. Were the parents aware of what happened?

enprovence Sat 08-Aug-09 18:20:05

Hi, its just the beginning of the journey really. He has extra support once a week at school which focuses on his social interaction skills.
The problem with the bullying is that he is socially naive and there have been incidents where he has been teased and goaded by the more cunning children (who when a teacher looks, they stop what they are doing and look all innocent) he then finally, after much teasing reacts to this by pushing, or shouting or throwing something and is then told off by the teacher with the other children looking like the victims.
I have spoken to the school about the problems in the playground, exclusion, teasing, chasing, goading, name calling etc and they have only just started to accept that there is a problem.

We will go on 17th aug to see the child specialist at the hospital which I imagine would result in a formal diagnosis. But where does it go from there? What do I tell him when we go to the hospital, what happens during the assessment? Can I talk without him listening to the conversation with the specialist? Do I need to prepare for this in any way? I have thought about writing down some of the things he does to tell them?
What happens after diagnosis - will we be offered any help/support/repite?
I'd be grateful for any advice or information.

enprovence Sat 08-Aug-09 18:25:14

I only found out about what happened on the way back from the party. My son is very thick skinned, you could say he lacks empathy when in a situation like this which is why it is so strange for him to become upset, what I am saying is it must have been really bad for him to be that upset.
As its the summer hols I can't see them on Monday in the playground, there are a couple I could ring but I am still so angry I don't want to start shouting.
I have some names of the main 3 boys who picked on him and I will speak to the parents when they go back on September. The problem is the school don't like to disclose who has ASD so many of the parents don't realise. I have told a few people and hoped word would get around.

PeachyLaPeche Sat 08-Aug-09 18:30:07

Are you us? taht'sexactly what used to happen to ds1! What they did was establish a circle of friends- basically seven people chosen for their sense but also liked by ds1 were selected for the scheme, they ahve fortnightly meetings where ds1 can talk about things that have gone wrong and get feedback, but also they are in the playground and can raise the alrm or intervene if needed- they are on his side. Hasn't made things perfect but has improved it immensely!

You should be offered a chance to chat alone but there's no guarantee, it's very likely your ds will be there for a great deal of it so be aware of that. A dx can take many appointments though as you are most likely to be referred to different specialists (Speech therapy,,ed psych etc) but some areas run a CDC schme where it is done in one go- it is all very regional and you would need to ask.

After a dx- you might get some input but again that avries. You would however be eligible to go on the NAS Help! scheme, which some people find is the best source of i9nfo going so to be recommended (I haevnt amde one yet).

you can already apply for things like DLA if you need to, and that's wotrth a look, as is a read of the code of rpactive for SEN.

by the way- welcome to the SN section grin.Loads of us here. I ahve 4 boys, one AS / HFA and one with autism.

enprovence Sat 08-Aug-09 18:48:26

Many thanks for the reply I will go through it and look up the things you have suggested and let you know.
I have 3 boys, 7, 5 and 1. My middle DS has a chronic skin condition, since 3 weeks old, but thats another thread!!! My eldest son is Aspergers so it is so stressful.
I think I feel ready now to face the world and deal with this, it has been a tough few years!

LoveBuckets Sat 08-Aug-09 18:54:35

A DX can be great for parents and therefore great for the child too. To be able to dump all those 'what ifs' and maybes' is such a relief, and let go of all the self-blame too, it turns out you're not such a rubbish parent after allgrin. You can also forgive your child too for their behaviours and all the times you've resented them for your lives not being like other families. Your head will be cleared for focusing on the future and fighting for your child. I think confidence is such a valuable thing when it comes to parenting a child with ASD but so many parents are stuck in limboland without a DX.

Even if it's not a shock, it is still an emotional rollercoaster ride. I was surprised to find myself crying simply because it was a watershed moment in our lives. Another time I cried when I realised it wasn't just him getting a SN label, it was our whole family. And I also cry when I read nice things about carers because I forget that I am one too.

DLA is heartrending to apply for but well-worth it - depending on your income it can increase your child tax credits, get you Carer's Allowance and all sorts of useful stuff. Even if you don't think you need it, bear in mind he is likely to have expensive hobbies or want university education so it could all just go in his child trust fund. Or split it between siblings because they are affected by his condition too.

I can't help about the social stuff yet because my DS leaves his beloved inclusive pre-school for regular un-statemented mainstream Reception next month. Meep!

Good luck.

enprovence Sat 08-Aug-09 19:24:07

Thanks Lovebuckets for the reply, its so helpful!
I have felt like a rubbish parent at times and its true we cannot do things that other families do. A simple trip to the park is so stressful for me, wondering what my DS might do, or say. A trip to the supermarket is never without incident. I cannot envisage a time when we can eat calmly in a restaurant. My middle son and the baby went out to eat the other day (my son with aspergers was with his grandma) and I can't tell you how calm it was. My middle son sat and ate his food, chatted with me, the baby slept and woke up then ate. All wuite normal and calm! I have to say that had my eldest been there the whole restaurant experience would have been totally different, in a good way - he would have chatted to the staff and other customers, been excited and gregarious, but then you get the looks and stares and hushed comments that he does not notice but that break my heart. He is so, so sincere. He is just a child but he does not notice the comments, staring.

LoveBuckets Sun 09-Aug-09 08:57:07

Yeah I've got that to come I think, we're in a lull of seeming normality right now. DS1's amazing pre-school have programmed him to behave more or less like a regular 4yr old so he doesn't attract so much attention. But in a few years time he will still be larking about with the volume control of a 4yr old and the technical abilities of a 13yr oldgrin.

I'v always used a superhero analogy to describe him since he was a baby and will probably use it with him when he starts to struggle with other people. Imagine baby Clark Kent, (DS always had superstrength, high pain threshold and seemed quite arrogant for a baby!) how hard it must have been to put up with all these mere mortals wasting his time with their silly human rules and interaction customs. But he did learn to love them, for all their foolish ways, and to use his powers for good not evilgrin. I should write to Stan Lee...

LoveBuckets Sun 09-Aug-09 08:59:04

Oh yeah, we get a disabled child annual pass to our local zoo which includes any adult free as a carer. Very useful for the holidaysgrin.

debs40 Sun 09-Aug-09 11:02:09

Lovebuckets..I like the superman bit. I say something similar to DS about his super sensitivities. I say he's like Wolverine with his heightened sense of smell! It makes having to evacuate restaurant tables because of sudden attacks of 'there's a bad smell, I'm going to be sick' much easier!

enprovence Sun 09-Aug-09 14:25:35

Lovebuckets, how do you get the disabled pass for theme parks, do you have to get DLA for your child before you can get this?

Up until now I have totally avoided going to theme parks like Chessington ZOO as I can't face it but with a pass like this it would make it almost bearable to do>

My middle son has a chronic skin condition, so bad that it has affected his schooling and I have to go in every day at lunchtime to apply creams and changed his wraps. The secretary does the mid- morning application. We have only just applied for DLA for him and are waiting for a reply.

Its not so much the money, although a little extra would help as I cannot work, but more the recognition of this disability and how it affects us as a family.

Is is possible to get DLA for my DS with asperger's?

LoveBuckets Sun 09-Aug-09 18:39:28

Yes you should be able to get it for an Aspie - plenty of help on here and get all the supporting documents you can. Has he seen the Educational Psychologist? If not, get SENCO to refer - Ed Psych report can be useful for DLA app and will advise the SENCO too in general.

Some theme parks etc require actual DLA proof but others I think you could just phone and chat to see what they want. The term 'Registered Disabled' doesn't exist anymore AFAIK but it is still bandied about. Most theme parks will have a queue-jumping system for disabled passholders etc which is brilliant for ASD folk.

Also Picturehouse cinemas do regular autism-friendly screenings which are great fun - no pressure to stay in your seat or be quiet! There is also a cinema card you can buy cheap to get you in free as a carer - have a look at the NAS website.

PeachyLaPeche Sun 09-Aug-09 18:46:01

Rather than DLA proof, waht you need is a letter stating that your child needs the help from a GP or Paed.

enprovence Sun 09-Aug-09 20:08:03

Thanks for that Lovebuckets, I will go through it all slowly. We have an appointment on 17th Aug to see a child specialist at Worthing hospital. I have no idea what this entails, no one has given us any indication. I have a book about aspergers, John Attwood I believe is the author, which has given me some idea but still, we are very much in the dark. After this meeting hopefully things will become clearer and we can start helping my son.

I felt reluctant to apply for DLA for DS2 as he is fine, in perfect health, but his Aspergers has such an affect on our lives that I have to accept it as a disability.

My other son, who has the chronic skin condition, yes I can accept he has a disability. He cannot play and do things other boys his age do as he has recurrent skin infections, is frequently in distress due to the itching. He bleeds, leading to infection. As I said, that is another thread altogether though!

I think, there is no harm in applying, although I don't expect anything.

We are not on any benefits (except for working tax credits and child benefit) and I have made hard decision to no go back to work last April when my maternity leave ended.
I need to be there for the boys, although at times it drives me INSANE!!!!!!!!!!!
Think the summer hols have begun to take their toll on me!

What is your situation with your child? How did you go about all of this, and how do you cope?

PeachyLaPeche Sun 09-Aug-09 21:07:38

Get yourself a copy of the criteria for DLA and base your decision on that. if his AS affects your lives and you could do with the money (bearing in mind if you qualify for tax credits there is an additional attached sum) then for goodness sake apply! Don't make things any ahrder for yourselves than needs be.

PeachyLaPeche Sun 09-Aug-09 21:09:05

Sorry, should also say if you gret middle or higher rate you will also wualify for CA from what you say. It all helps,and if you are finding it a bit hard (perfectly normal) can also buy you all some choices- such as a day at nursery for you to owrk or study.

LoveBuckets Sun 09-Aug-09 21:54:50

Enprovence, I'd heard about Aspergers before and had always suspected DS1 might be, since he was a baby. I felt bonded to him but there is nothing in the parenting books about when your baby doesn't bond with you. I also had an older child to compare him to. He was 2 when I started the DX process (after yet another disastrous day out bought me home in tears) which took a year and even up to the point we got the result I had been 50/50 whether he was or not. He's just had a year of pre-school with an inclusive place (funded helper) and they have worked such wonders on him that he will be a regular mainstream Reception student in September. But as I say, at some time the social differences will start to be noticed by his peers at some point I'm sure.

One of the best sources of understanding the syndrome for me has been a Mumsnetter called Amber (can't remember her exact MN name, sorry) who posts on this board sometimes. She has Aspergers herself and has given us many insights into the sensitivities and consequent behaviours. There is usually a sensory reason for the behaviours it seems, which is why as babies and toddlers they might have been too busy building coping mechanisms to do the usual developmental stages.

Have you noticed any tendencies in your families btw? It is definitely genetic in our case and DH and I have a new hobby spotting possible unDX'd Aspies! They really are everywheresmile.

enprovence Mon 10-Aug-09 09:33:54

Hi, its kind of a joke among my friends that we all think our partners have aspergers. Not very helpful, but I guess that gives an insight into how others perceive aspergers.

I think, though, in all honesty my husband has aspergers qualities, it is mild, but my eldest is very similar to him in abilities and personality.

I also think my Dad is mildly aspergers. So I do believe it is genetic. Obviously there is a lot more awareness of autism these days, in my dad's day I am sure it was put down as having a quirky or eccentric personality.

I don't want to put my son and his aspergers in 'a box' or label him too much, his is still and individual with his own personality.

What kind of behaviour have you noticed with your child that you find worrying?

For my son the main things are:

-lack of empathy

-unable to read body language so unable to tell if he is boring someone, if someone is sad

-he only understands really bold gestures, like exaggerated smiling, laughing etc, not subtle things.

-He always, ALWAYS talks in a really loud voice, every day I have to get him toreadjust his voice level!

-He talks in monlogues about his current obsessions, The Beano, Bus timetables, Dr Who

-He has one way conversations and shows little interest in others opinions

-He rarely makes eye contact, eye contact meaning not just in conversation, but to check for my reactions to what he is doing, to play with other children

-he has problems in large social situations with children his own age and is teased because is comes accross as socially naive or 'uncool'

-he is extremly bright, top of his class, EXCELLENT school reports, brilliant at maths and all logical things - the only issues
being playtime and social interaction.

-as a toddler, or still baby he walked by 8 months (my other 2 more like 18 months) and always on tiptoes.

I first noticed the problem the moment he went to nursery at 2.5.

-When on my own with him, or other adults and him, his aspergers is not so pronounced

Just some of the things about my son and why I and the school believe he has aspergers.

Barmymummy Mon 10-Aug-09 10:08:22

Hello Enprovence - just wanted to say Hi as I live in Worthing too. Have a DS aged 4 that has ASD traits and a NT DD who is turning 7 on Saturday. Just wondered what school your DS goes to? smile

enprovence Mon 10-Aug-09 12:09:07

Hi, We are In shoreham By Sea, my DS goes to Swiss Gardens Primary.
How have you managed with the Aspergers, have you had a formal DX yet?

jasdox Mon 10-Aug-09 12:37:24

my ds is aspie, and just amazing and wonderful, his nearly 4, and whilst still has no dx, it been verbally given. Sorry no advice, but this is my greatest fear for him. as he is happy and loving in his own way, but i can already see he will become a target, as he is not aware enough, and will do things when asked without fully understand (takes him time). Pre-school have been great, but school well, another matter.

On a different note, when to Legoland, had access through someone else to a disabled pass (one red stamp (SN person) can take 3 guess) and had a great day, although busy avoided the difficult queuing and they loved it grin.

Good luck

LoveBuckets Mon 10-Aug-09 15:23:55

We think both grandads are on the spectrum but they are so different from each other we only recently realised it about FIL and he is way more obvious (haven't told him, he wouldn't listen anyway grin.) My dad is the confident superhero type who was obviously very lucky to be encouraged to follow his dream, ie engineering. AFAIK he has steamrolled through life without too much stress, just exhausting and baffling in the processsmile. FIL not so lucky as I said, he was badly bullied at school, never found a job he loved and is ruled by a lot of sensitivities and consequent fearsad. Both have been married over 35yrs though so that's encouragingsmile.

My DS1 is a toewalker, we all thought he was really tall until he finally let us measure his height last year and he is just 50th centile! He wouldn't follow adult direction at all til Pre-school 'programmed' him, I try not to dwell on this - life is soooooo different nowsmile. Let's just say his dimple and catalogue moggle looks have saved his bacon many many timesgrin (and probably will in later life). He has always had a massive vocab (even before he could talk I could see it was there) and seems to be good at languages already. He loves anything to do with space, robots, rockets, aliens, and lately weather vanes and anatomy.

enprovence Mon 10-Aug-09 18:09:52

Sounds very similar Lovebuckets to my DS who talked really early, has a huge vocabulary and is so articulate, using language in the right context.

He is however, not very emotional and sensitive. He never comes for a cuddle like DS2, never liked cuddly toys, or comfort blankets.

Talking of space and aliens, his class teacher nominated him for a placement at the Planetarium in Chichester, for bright and gifted children. I was very proud that day, however once he came out of the course he showed no interest whatsoever in what he has seen and proceeded to tell me all about cars and car makes and models.

I suppose with Aspergers it is about channelling his interest or obsession into a career where he does really well.
He is a real logical thinker is excellent at maths, science and IT. All the things I am not good at !!

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