My own child - Aspergers - advice needed!

[mps09]

Dear folks,

 

This probably isn't the right place to post, but I am really in need of some guidance, for myself and my child - and I didn't know where else to post! You peeps are always so helpful and supportive, so I was hoping you might be again!

 

To get a diagnosis - or not....

My son is 13 and I strongly believe that he has Aspergers.

My story starts when he was about 18 months old, and became mobile, as a very focussed child he would repeat behaviours for HOURS even when I tried to distract, discipline him. His social interactions would always end with negative physical acts and so taking him to groups, pre-school, family events was always a very stressful time! Primary school was horrendous! Almost every day from year 2-5 started with arguments, struggles, meltdown, kicking, swearing 'I hate you', punching..... Year 7 (first year at Secondary school) started well academically but has since gone downhill with regard to his compliance with rules, expectations, homework, socialising, etc.

Emotionally, I'm a wreck at the moment! I have spent many years working through these difficulties, trying to convince myself and others that it is not my parenting skills!

PCAMHS were involved at age 8, but wanted to discuss the possibility of Aspergers with my son and I didn't want to pursue it as I was so unsure of the future this would bring and how this would affect his wellbeing being told he had a 'disability'. (no offence meant but this was how I saw it at the time) - and so nothing more was done - I just continued to muddle through.

I broached the subject at Secondary school and while the teachers agreed that this might be a possiblily, it again wasn't pursued and I wasn't ready to push things.

I work in a pre-school and a child has just joined us who has HFA and having studying this and done lots of reading, I feel like I have had this shoved in my face and there is just no avoiding it anymore.

I know in my heart that DS has Aspergers
I know that I don't want him to reach adulthood and look back and hate me for not being stronger and pushing things on his behalf
I know that I failed him by not reacting differently to his differences when he was younger
I know that I could have understood him more and helped him work through things - instead I spent years just wishing day by day that he would behave live all his peers.
I know that many people in the village where we live just think that he is a 'naughty' child who needs more control.
I know that this is not the case and that often he can't help how he acts and the decisions he makes.
I know I have a responsiblity to do the very best for him

But my problem now is.... how do I approach it with him?

I recently tried to open a conversation with him by saying 'I have been reading a book about Aspergers' and he just shouted at me 'DON'T YOU DARE SAY ANY MORE, I HATE YOU'.

What if he is happy with how things are? He doesn't know any different after all....
Will having a diagnosis actually change anything?
I have read several books now and feel much more in control with explaining and preparing him for things as well as using social stories which have really helped at home.
Having a diagnosis doesn't automatically mean that other people including teachers will adapt their approach with him, so is it needed?
Can I support him enough on my own?

Wow - I can't believe how good it feels to write all this down!

If there is anyone out there would similar experience or just some advice I would be really really grateful for any advice, views or responses to my experience.

Thank you for your time.

MPS09

[blondie]

are there any simple books you could share with him - an adult that he is close to to support you both - someone who can be a bit less emotionally involved?

are there dvds you can watch together?

perhaps leave things around that he can look at on his own in his own time to start the process - very difficult time for you both - i hope everything works out well for you - keep in touch x

[Rea]

I'm sure most of us have worked with a parent who didn't want to hear their child might be different. You're being told your child is broken and all the hopes and dreams you have for theirs and your own future might not happen.

Please don't be hard on yourself for the past. You have done everything you thought was right and tried to give your child the support he needs.

At this point I wouldn't try to give your son a label, its clearly upsetting to him. Instead I would talk to my GP and the school. Be very honest, print your post from here if it helps. Find out what help and advice is out there and take things one step at a time. Maybe join a forum for parents of children with aspergers, they will have been in your position and will have advice to share.

Your sons reaction could also be part of being 13, not one of the better ages!

Its never too late to get help and acknowledging you son has a problem is a massive first step.

[HoneyPancakes]

Sending virtual hugs. I expect I'll be asking myself the same question some time in the future but things are fine for the moment. I suspect my husband is at that end of the spectrum and he absolutely refuses to agree that there's any such thing as Aspergers so bringing it up about our son isn't an option.

 

This support forum has been helpful to me in the past - http://board.asdfriendly.org/ Maybe you will find it helpful too.

 

UpsyDaisy springs to mind as someone who is very knowledgeable on this topic.

 

I hope you are able to find a path you are happy with.

 

Honey.

Edited July 27, 2013 by HoneyPancakes

[JacquieL]

I think that you need to help your son understand that this isn't a disability, it isn't, but is another way of thinking. He is not neurotypical

and has abilities which are different, and needs nurturing to help him understand that although he is different he is a capable person with special gifts. Aspergers is a fascinating way of being. I would get in touch with the National Autistic Society and see if there is someone in your area who can help you and your son. In the meantime he might like to read ' The curious incident of the dog in the nightime'.

[mps09]

Thank you for all your kind words and advice! I have spent so long 'pretending' that all would be ok and stumbling from one incident to another, it actually feels so good to actually 'talk' about it and be honest about my feelings and observations.

 

I shall take on board all your comments and I know now that I/we will get through this.

 

How come I can be so positive and professional when speaking to/about other people's children???? Not the same when it's your own....

 

Thanks again.

[Rea]

The Curious incident of the dog in the night time is a brilliant book

[Upsy Daisy]

My older daughter was 12 when we were told she has Asperger's Syndrome. Things went badly wrong when she started High School and this led to her missing a year of school and spending several months unable to leave her bedroom.

When the CAMHS psychologist mentioned AS I felt like my whole world had fallen apart. It took me months to get my head round the idea but, at the same time, it felt like someone had given me the missing pieces of a jigsaw. Suddenly all the odd behaviours I puzzled over through the years made perfect sense.

My daughter had been supported informally for a while in the unit in her school for pupils with Autism and apparently had realised straight away that she had Autism too. I didn't know this until CAMHS told me and I raised it with her six months later. She feels strongly that her diagnosis is a positive thing for her. It helps her to understand herself better and gives her an identity, a group to belong to, rather than just feeling odd and isolated.

Her diagnosis has also been the key to support in school that she needed in order to be able to attend.

When I began to read around AS I realised that my younger daughter had it too and she was diagnosed about a year later.

It sounds like your son really need his school to put in some decent support for him. This support needs to be arranged in cooperation with him and while being realistic about what he can achieve independently, it must not make him feel singled out or special if this makes him feel uncomfortable. That's a very difficult balance to find and a battle which could take an awful lot of time and energy from you.

I am a member of a forum for parents of children with ASD, at all levels of functioning, with and without diagnosis. If you'd like to look at it Google ASD Friendly. It's been a lifeline for me, as has the ear of another member of this forum who has listened for hours and helped me retain my perspective.

Although I believe that getting a diagnosis is generally a good thing, I wouldn't take any steps until he is in full agreement. It doesn't sound like he is happy at the moment if things aren't great at school but it also sounds like helping him to see assessment or diagnosis as a positive could be a mammoth task. He needs to see it as being wired differently rather than disabled.

I just asked my older daughter to recommend something your son could read and she came up with The Curious Incident, too.

There are also some good Youtube videos made by a young man with AS. If you search 'Another Wavelength' and then watch them yourself you might find something helpful.

The past four years have been an emotional rollercoaster for me. Even though I pushed for my younger daughter to have a diagnosis I still felt like I'd been it by a train when it was confirmed. I've lost friends who have refused to accept the diagnosis and fighting for school provision has been hell at times. There have also been highs like watching my older daughter come back out of her room and blossom into a beautiful, reasonably self assured young lady who is going out to meet friends and living a much more fulfilled life and has good solid plans for the future.

I'd be happy to exchange PMs to share more information and experiences if that would help you.

Have you read anything by Tony Attwood? His 'Complete Guide to Asperger's Syndrome' was my bible for a while. There are some good videos of interviews and articles on his website.

[JacquieL]

What an inspirational post Upsey. Thank you.

[Steve]

Hi mps09 -

Hope things work out well for you - and I'm sure you'll continue to get good support and advice from this community. I haven't got anything useful to add unfortunately, so started out by 'liking' posts and hoping Upsy Daisy would find her way here. Only to find out there were too many posts to like and Upsy Daisy already had!

 

So there you are. Much better help than I can contribute. I and many others will nevertheless be thinking of you.

[Sue R]

I have very recently read a book called 'The Reason I Jump' by Naoki Higashida, translated by David Mitchell and his wife, I found it moving and informative. You may find it helpful?

[sunnyday]

mps09 - I can't add anything helpful - but couldn't possibly 'read and run' - great advice, as ever, from Upsy..........sending two huge hugs - that's one for you and one for your son xx

[Stargrower]

This thread has reduced me to tears. Firstly ones of sympathy and sadness that some of us have to fight so hard to find what is best for our children and then of gratitude that there are people like Upsy Daisy (and others) who are able to offer so much support and insight.

[Madmum]

HI!

I have 4 sons 3 with ASD. 2 have Aspergers and the youngest a diagnosis of ASD although it seems more like Aspergers now. My 3rd son was diagnosed at 6 which led to his oldest brother being diagnosed at 15 ( the Clinical Psychologist knew within 5 minutes of meeting him!). The youngest was diagnosed initially with a communication disorder which changed to ASD after a DISCO assessment was done.

The eldest (now 30) got to Y11 with no help and we had so many problems through primary and secondary. Once he, we and the school understood, 6th form was less stressful as was college ( he did a Business HND). He has worked since 6th form and now works full time in an office based job and shares a house. he was also diagnosed with Epilepsy at 19 but has coped with that too. he doesn't tell people he has Aspergers and believes he shouldn't use it as 'an excuse'!He has a fab close group of friends who are used to him!

His brother(now 20) was always very challenging. he threw furniture at home and school and had spectacular meltdowns. The support at primary via a Statement was fabulous, Secondary was less successful: I think that fact that he managed some academic stuff quite well challenged them, Once he knew he had Aspergers he was very proud of it. he loves autism awareness stuff. He loves music so did Music tech very successfully at college with fabulous support which wouldn't have been there without the diagnosis. He now works in a shop. He can still be very challenging and can drive me to despair within a few minutes of coming home. he can be very loud and still says exactly what he thinks!

My youngest was the hardest to accept the diagnosis for. He seemed fine until he was 3, then Nursery quickly identified an issue. Due to his brothers he was seen quickly and diagnosed. He had support to start school and again fab support through primary. Secondary was so- so, but he achieved his 5Cs at GCSE having been initially on the cusp of being classed as mentally handicapped due to his low IQ at diagnosis. He is now at College doing Games development. he has no social life other than via the XBox. Both of the youngest 2 find social stuff really hard and I still find it heartbreaking to see their peers driving and going on nights out and holidays etc. We've not had a holiday for 10 years because they can't cope with it.

 

I would say investigate diagnosis and look into what support is there. It is harder as they get older to access support - we've been left pretty much to it other than school support for about 5 years. Once you start to look into it it's up to you how much or little you choose to do. If you can get the school on board it will make your life much easier - my sons' Primary school SENCo was a fabulous sounding board!

If you look at what my sons have achieved there is lots of how. Yes there are still down days, but the worries change as they grow up. It has helped me at work too!!

Happy to answer any questions or PM me.

[Guest]

My experience of ASD/Aspergers is limited to teaching children who are on the spectrum, a few of whom I've been the one to get the ball rolling on diagnosis/statementing. More than anything it has really shown me how parents are exhausted by the daily demands of caring for their children and how much support they need and deserve, as well as their children. I don't have anything to add to the comments above but wondered whether you've a Parent Partnership network in your area? I've had a little boy in my nursery class just this year who has a statement for his ASD, and we gave mum the details of the local PP network, through which she managed to obtain some respite care in the form of a play club over the summer hols. I know your son is older but it's just an example of the support that's out there that many parents aren't aware of.

BTW - Curious Incident of the Dog in the Night Time is a brilliant book! Good luck. x

http://www.parentpartnership.org.uk/

[mps09]

Thank you all so much!!

 

I have investigated the suggested books and already feel so 'empowered' to approach this again with my son. I will report back! I just feel so grateful to have a forum like this to share and seek advice and always receive such good support.

 

How truly blessed I am!

 

Now I have opened my mind to the possibility it is so amazing how everything just falls into place and previous difficult situations suddenly make sense! And I hope to share that with my son and hope and pray that he will feel the same - if not now, then at some point when he is also ready to accept and hear about this.

 

I think I said this before but the relief of just putting my thoughts in writing has been truly astounding!

 

Many heartful thanks to everyone again.

 

BW,

[Rea]

So glad you're feeling positive. The old adage 'a problem shared is a problem halved' springs to mind. Good luck with your son

[Beau]

My daughter is 14 and we are currently going through the diagnosis process with her. Things have always been difficult for her and I identified some very strong ASD tendencies in her years ago, but I always felt that she 'wasn't bad enough' to warrant a diagnosis. Secondary school has been a nightmare though, and eventually in December after reading a lot of stuff about Aspergers in girls, I realised that she had more than just 'tendencies'.

Luckily for me, when I approached the subject with her, and she read up on it herself, it came as a huge relief to her. It has also been hugely beneficial for me as I have adjusted the way I deal with situations now that I'm more aware of all the problems she has. It has also empowered me to push for adjustments and support within school which I'm glad about, as life is enough of a struggle for her without extra things to worry about.

 

Personally I think it's important to understand yourself and at some point your son will benefit from this knowledge if only to enable him to identify areas where he struggles which will help him to seek more effective strategies for coping. I really wouldn't think of it as a label, but more a doorway which will open up the right information for him. Whether he chooses to share that with others in the future would be up to him. However, it sounds like he needs time to process what you have said to him and you can't really proceed with anything until he is open to the idea. Do you think it likely that he will go away and read up on it off his own back and draw his own conclusions?

Upsy Daisy pointed me to ASDFriendly which has been great. I don't post a lot there but have read loads, so I feel much better informed and prepared.

 

I too wish I had done something about this much sooner, but there is no point regretting the past.

[Guest]

My friend's husband has just been diagnosed with aspergers at the age of 45! It just wasn't recognised and understood in his childhood and he has developed a myriad of strategies himself to cope in social situations and to read people. He has found it a tremendous relief to finally have the diagnosis. With the diagnosis he has been able to negotiate to work at home a couple of days a week and a greater understanding amongst his colleagues as to why he struggles with social situations. That's I think where it helps to have a diagnosis in Place so that people understand and make allowances or approach situations differently with him. For my friend's husband it was a gradual dawning of realisation that he thought and processed differently to others. His thinking to him was 'normal' and others around him were strange.

Deb

[Guest sn0wdr0p]

My 13 year old son is autistic and has ADHD. We have some amazing meltdowns that few people would believe how destructive and upsetting they are (for all of the family and the house and furniture). Describing it later to someone just can't convey how dreadful it can be. He was diagnosed at 11 and at the time we decided against medication.

 

He is really adament that no one knows and was very very upset when a 'friend' of mine told her son who then told all his school friends. He copes at school but once home he lets rip. We are pleased that he can do this but we are now at the stage of considering medication which following meltdowns he agrees is a good idea - he said he just can't think straight and can't stop himself, but once he is calmer he is against it again. We do think this is because he is worried that others will find out - is confidentiality an issue for your son? At this age they are so self conscious and being just like everyone else can be so important. We would/could not force medication on him and hope we can slowly get him used to the idea and reassure him that there will be no side effects - he has said he will become like a zombie

 

The school has a learning support department who were super before transition and provide extra support when needed - he does say the classes he goes to there are 'stupid'. They are more about social interaction. Unfortunately some of his teachers are not aware of it and at times he has been given detentions for arguing with them (in his world there is black and white but no grey areas and rules and promises are not supposed to be broken by teachers). Each parents evening my husband and I have to explain to teachers why he is like he is. One even told him in front of us that there was no excuse and he had to get on and cope with life and living with ADHD was nothing (she should cope with his despair about it at home) after he ran out of the classroom when another child punched him in the face - IN THE MIDDLE OF HER LESSON - we were fuming.

 

I think a diagnosis is important as he should then get more support and understanding at school. My son was always labelled as naughty and in honesty a proper label has helped.

 

My youngest age 10 has been referred by my GP to CAMHS who have refused to see him. Without doubt he is on the autisitic spectrum, cannot tell the time, sequence days, months etc., has few friends and has no concept of the passage of time. I dread to think how he will cope when he transfers to senior school.

 

A lovely ending story though. We live 50 yards from the supermarket and his brothers and my husband fancied mars bars last night and we needed milk for breakfast today so after getting £10 from Dad off he went. He returned 10 minutes later with a packet of biscuits for them and an £8 bouquet of flowers for me and very little change. That's my boy! Bless him.

[mps09]

HI everyone,

 

This has been such an emotional journey for me - and I thank everyone for their contributions and stories. I apologise for not responding, I wanted to write pages for everyone! I have been very up and down over the last few weeks, not sure what to do for the best, and then feeling 100% certain what I need to do..... I'm sure many of you with empathise with that!!

 

It's lovely to hear such positive stories and outcomes, I know it is not always easy and the support that people receive can vary immensely.

 

Today, DS and I visited the doctor and I just blurted out "we think he's got Aspergers", and Dr was just so supportive. He asked a few questions, and spoke with Adam, looked through my notes (5 pages worth - and I think he only did this because he could see that I wanted to get it all off my chest!).

 

Anyway, the outcome was that Dr agreed that just talking with DS showed some unusual traits, and from what I'd said he would agree that there were many traits of Aspergers. He was just so supportive and accepted my instinct that all is not right..... and has made a referral.

 

I know it's not going to be an easy ride, but I feel strong enough to face it now and I know where to come when I need to get anything off my chest!

 

Many thanks again for 'listening'..

 

:1b :huh: :blink: :mellow: B) :rolleyes: <_< :1b :angry: :1b (full of emotions!!)

[sunnyday]

Oh that's wonderful news - well done you! How brilliant that you had 'prepared' so well for what must have been such a difficult appointment.

 

Wishing you and your son well for the referral x

[lashes2508]

I can only send you lots of positive thoughts and glad that the fantastic advice from those who really understand what you and your son are going through has been passed on . In Essex we have SAFE - supporting aspergers families in Essex - i wonder if there may be one near you ?

[Rea]

Glad it went well and your doctor is helping. Seem's your son's onboard too, which is great

[narnia]

Thanks upsy for the link to ASD group, I have just registered with it as we have a child in our setting who is currently being assessed.

[eyfs1966]

just wanted to send a virtual hug as a mother of an aspie 14 year old boy myself. A challenging, exhausting, draining, frustrating yet utterly unique and inspiring boy he is too. Keep at it, believe in your gut instinct, and fight for his rights.

[Sue R]

Just sending good vibes here, too. Big hugs

[mps09]

Dear folks,

 

Well, I have been on a major rollercoaster over the last few months which finally came to rest last week when we received a diagnosis of Aspergers for my son.

 

I am well aware that this is only the first ride and there will be many, many excursions along the way!!

 

thank you all your encouraging words when I posted before.. and I wanted to share my latest news.

 

I have yet to tell anyone in 'real life' (other than family) but I'm sure the courage for this will come.

 

I have to say that I am excited about and really pleased with this outcome, although I didn't think I would be! I feel like a huge weight has been lifted and that I can now get on with parenting my son the way he needs me to.

 

And on a very childish note - I have written a letter to all those horrible parents in the playground, the teachers who constantly told him off, the group leaders who asked him to leave because he was too naughty and the PTA chair (who my son called a fat cow) who banned him from future school discos........ and the parent who told me that my son scared her son and could I make him stay away....

I told them all they should feel terribly ashamed and guilty about their intolerance and total lack of understanding and that they were not worth the heartache they caused me....

 

..... and then I shredded them! but BOY did it feel good!!!!!!!!!!

 

I am a new, improved, happier and don't care mum!!

[Panders]

Go mps09! I'm glad you feel you are on the road to a brighter future - this can only be a positive thing for you and your DS

[Rea]

Thats fabulous, really pleased you're feeling so positive