To diagnose or not??

[Unfitmother]

DS is 10 now and has been receiving help for SEN since pre-school. He has a statement of SEN on account of his social and communication problems. Saw a peadiatrician a year ago who suggested ASD abd referred him to a psychiatrist for diagnosis. DH flipped at this, saying "over my dead body", he's very concerned about our very bright child being labbelled for the rest of his life.
We're still waiting to see the psych and have been told he won't be seen until Aug '08.
He's due to start high school in Sept and the school we've requested has an Autism support base which he won't be able to access without a diagnosis. His next review meeting is in March and he won't have seen the psych by then.
Saw the peadiatrician again today who said I could quote him as saying that DS has ASD but I know how strongly DH feels about it, though he has come round a bit!
Anyone else got a DC with ASD and how did getting an official diagnosis affect the support they received?

Thanks in advance!

Dgeorgea - your family sound wonderful, you must be very proud of your daughter. My own DD3 also has ASD, but with severe learning difficulties. I think realistically she will never have the sort of independence you describe your daughter as having, but even for me, who has a child with more severe problems, to hear your story inspires hope for the future that she will have fulfilled life. Best wishes to you all xx

I agree with you theheadgirl, and it's very nice to see a dad on here too dgeorgea!

Unfitmother,

My ds is 12 and recently diagnosed AS. he doesnt have a statement, but this may be because he is in a very small, independent school which supports him and is understanding, and I have been told he may need one in a mainstream.

He is going to leave there at 14 and I think that having the dx is going to help him in a large school which will entail a lot of new people and experiences to ddeal with. it was with this in mind that I began the dx procedure this May and have been astonished at how quickly we were seen and dx'd, considering how mildly I would say he is affected.

I was also told recently I might apply for dla and was taken aback, this is I think because I still see him as not as having sn because he is just himself, and perhaps that is where your dh is at the moment. and it is true, they are themselves, but I believe a dx, and dla, and statements can help them to achieve their full potential.

I have a brother who is very probably ASD, and has strong social difficulties, I dont know if he has ever been assessed or dx'd, but I know that he had to drop out of a very good university because of his problems, and dgeorgea, hearing speak of your daughters capabilities and independent life reminds me of why i sought a dx for my son and what I know he is capable of achieving with understanding and support. It also saddens me a great deal to think what my db has missed out on and how things could have turned out so differently for him had he been dx'd.

I have told ds about his dx already as he was beating himself up about it. we have quite rapidly gone from horror to curiosity and an increased understanding and this is only the beginning. He is also anxious that people may hear dx and think he has a mental ilness. As someone else said here he doesnt have to tell anyone he doesnt choose to.

We are at the beginning of a long road, (end of long ramble).

thehaedgirl,

Thank you. I find it hard sometimes, we are very lucky and appreciate that. Yes our daughter has Aspergers but without the learning difficulties often associated with it. We have also been very lucky with her secondary school, we truly do have a partnership with them and we work together rather then against each other. Important to us all as she was denied an assessment.

But to share some of what we went through, when she was very litle mum promised she could have a go on the ride at the shopping centre. When we got there it wasn't working and she had a melt down. In the end I had to pick her up and carry her. By the time we got home my cheek was raw and bloody and I had a huge bruise on my hip where she had scratched and kicked me all the way home. She went to her room when we got home and came down half hour later. She was realy upset about how bad I looked and mortified we thought she had done it to me.

The couple of years before she got her diagnosis were very frustrating for me personally. It was like we had a Jekyl and Hyde. Things would go well and then she would suddenly blow it all over something stupid. The worst for me was the way she would suddenly announce she was scared of me and her body language would become very exagerated. It got to the stage where two or three times a month I would find myself screaming at her, thankfully I've never found a need to hit a child. And all the time whenever we mentioned anything the 'experts' would tell us there was nothing wrong with her.

Despite all that it was by chance/accident that we ever got round to finding out she had Aspergers. Some of the primary school staff were discussing year 6 students who would need help with the transition to secondary and how they could help to smooth this for them. One of the support staff was looking out of the window and saw our daughter standing in her usual place and asked about her. From what I later gathered the staff discussed her and it was only when they began to compare notes that the alarm bells rang that there might be something significant going on. They sought advice and was told it sounded like Aspergers but to mention to us they thought it might be a behavioural and social problem. Thankfully the support worker respected us enough to tell us what was realy suspected.

One of the first things I learned about Aspergers was they don't perceive body language. Almost immediately I made the connection. The reason her body language was so exagerrated was because she was probably learning them from cartoons! It was a shock and hard to accept that at times my daughter realy was scared of me and wasn't deliberately trying to upset me. To make it worse I was screaming at her!! I always say it wasn't my daughter who changed but me, fortunately for the better. The 'label' didn't take my daughter away from me, it showed me who she realy was, someone I am hugely proud off and honoured to know.

I went to a special school from when I was 6 till I was 15. One thing we learned was to accept was who we were and never to give up on ourselves or in having dreams to strive for. One close friend from school suffered from epilepsy and would on occassion be rushed to hospital suffering multiple fits. After school he got a job sweeping roads and loved it. He has a great family and is now a manager still working for the same council. I am doing things now that I would not have thought possible two years ago, let alone leaving school at 15. I have gone well beyond what I thought my limits were.

It is great you have a realistic assessment of your child, and this is important, but always aim 'high' for your daughter and believe in her. She may not get there when you would like, but with confidence, time, maturity and experience she may well pass what you think she is capable off. I'm sorry if that sounds a little glib, it is not meant to be.

Hugs to you and the family.

Thanks aquariusmum. There was a nice lady on the tv this morning from mumsnet, sorry cannot remember her name, and I got curious.

wow dgeorgea thank you thank you thank you. I am so touched by your post and hearing about your lovely dd haas given me so much hope for my own gorgeous dd. Hugs xxxxxx

This has been such a gerat thread to read, it sumsalot about how I am feeling, and has helped me cope with a diffficult few days.
I have one ds who has asd, although I don't know where he ison the spectrum. He is verbal but in a strange way, he has a mixed bag of 'traits'. I have just about begun to accept that, but now am faced with the realisation that my older ds, may also be on the sectrum. The school hs startd making noises about 'social problems', and I have indeed been in denial for a long time, and have made alot of excuses for his behaviour.
I now realise that just because I can't deal with the idea of him also being on the sectrum, I have ot pull myself together, becausemy db needs me to. I have been watching him in the playground and he is always standing by himself, and just watching as the other kids all play together. I have seen him do this before, but always made excuses for him. Now that he at school, it is so obvious, and he really does stand out. He has a rigid routine that he sticks to everyday, and he will not tolerate any swaying from it. He is obsessed with calenders, and the time on the clock. He gets really upset by the slightest thing, and finds it very difficult to calm down. He still has problems staying 'dry', and often comes home from school slightly dirty, or today with poo in his pants, sorry if tmi.
I know I have to get him assessed.
I remember to thinmk about his good points though.
He is extremely bright, and very polite!
Thankyou all!

Ps, sorry about the garbled post, but I am finding hard to talk about it, and am not yet at the stage where I can type up fully what his problems are, I can barely admit them to myself. Lame, I know!

Deeja,

Your post is not garbled, nor are you lame! With so much emphasis on conformity it is not an easy process to go through. And it is not easy to admit our childrens short comings and well done you for picking up the courage to share. Plus I am certain other posters and readers will relate to much of it.

ASD is a nasty condition in that it can be 'hidden' and go by unrecognised by others who judge our children and us by their behaviour against 'standards' which do not apply to our children. It isolates us from others early on. How many times can you be excited by your child's achievements and share them with other parents to be told, 'oh my child was doing that two or three years ago'? It removes not only the childs 'glory' for their achievement but that little bit of enforcement which comes from knowing we are doing a great job and boosts our confidence as parents. This same process stops us sharing with other parents who may be offer support if not ideas which they have found worked for them.

Oh, and there are things I cannot share without tears coming, or if speaking find my voice getting emotional. One of the hardest things for me these days is just watching my daughter when she interacts, or not, with others; because while others may not notice them I do see the differences, and the little habits she has which marks she has Aspergers. It is only recently I have accepted she does stim, with her it is clapping inappropriately.

One of the hardest things for me to admit for some strange reason was the day I realised my daughter was realy laughing and not faking it. It was summer holidays last year and my chest was so painful it was difficult to tell if the tears were from the pain or the pure joy I felt from listening to her laughing. It does highlight something I've seen time and time again though, as parents we do find it hard to share things about our children, good and bad.

DS is currently classes as having 'social & communication problems'. He's been having SLT since he was 2.5 and it's really helped.
One of the difficulties is that his problems are so mild, when everything's going to (his) plan he's fine. It's when things are out of the ordinary or something offends his highly developed sense of injustice that we have problems. It's very easy to push his buttons as the kids at school have found out and he been through an awful phase of being physically violent, though that's not his usual nature, he's so gentle with his little sister.

I can easily convince myself on a good day that there's nothing wrong with him when on others his ASD traits are screaming out. He loves to talk and be the class clown but does not care if the person he is talking to is remotely interested in what he is talking about, currently it's usually about football!

dgeorga, I've taken on board what you said about DLA and both DH and I said we would no longer dismiss it out of hand and may consider it at a later date. Need to get over this diagnosis hurdle first. The psychiatrist may turn round and say there's nothing wrong with him!

That sounds quite a lot like my ds unfit.

There have been times when i have doubted myself and thought i might be making more of his problems than necessary - especially this time last year when he was doing so well. However its becoming clearer and clearer to me that he is on the spectrum. He has a statement and at first i was happy just to have that as this gives him the support in school he needs but now we are pushing for a dx as i think it will allow us to get more support and also help ds to understand why he thinks differently to his friends.

If you decide to apply for DLA I have a link for a good website to help you fill in the forms. If i had just followed the booklet that comes with the forms ds would never have got it but by following the guidelines on this site he got middle rate care which entitled me to carers allowance which takes the financial burden of my not being able to get a fulltime job much easier.

Thanks dustystar, we're nowhere near getting our heads round something like DLA yet. I presume you'd need a diagnosis for that and that's not going to happen before August. I would like the link if you have it please, so I can start to think about it.
How did you explain it to your DS? DH is very concerned about what this will to do DS's self esteem.
I loved what dgeorga said about how he made sure his DD was told she could not use it as an excuse.

We have had DLA for 18 months and ds still has no dx. At the moment we don't giive it a name as he has nodx and I don't know what one he will get and don't want to confuse ds. We just talk about the difficulties he has and how he can help himself.

I think a dx will actually be beneficial to his self esteem as at the moment he has very low self esteem as he blames himself for the way he is. He is becoming more and more aware that his behaviour is causing him problems and that his peers are making other friwendship choices. He is finding this very difficult and says he is stupid and he hates himself. I think a dx will help him understand that its not his fault and that its ok that he is different to his friends. Maybe then he will stop being so angry with himself.

We are careful already that he doesn't try to excuse away bad behaviour. We make it clear to him that we understand it is often harder for him to behave than for other children but that his behaviour is still his respomsibility and if hr chooses to misbehave then that is a choice he makes and not something out of his control.

I don't think DS would be eligible, looked it up and it says it is for those 'who need help with personal care or have walking difficulties because they are physically or mentally disabled' and for children who need' considerably' more care than others. That's not our DS, thankfully.
His self esteem is OK at the moment, DH is worried that telling him that there's something wrong with him may knock that.

He may not qualify unfit - it depends on his level of disability. i think from the info you've put there that you are probably looking at the physical disability form and you want the childrens mental health one. I know that sounds scary but its just the way they distinguish between a physical disability and other kinds. i'll see if i can find the link

DS is high functioning and is quite capable of physically doing everything his peers can do. His problem is he is very easily distracted and needs constant encouragment and prompting to stay on task and get things done. This is at school and at home. He is also very impulsive and has poor awareness of danger so needs constant supervision in that respect too. He can also be aggressive and occasionally violent when he has a meltdown so this is another reason for the level of supervision he requires.

I can't remember all the stuff on the form now but basically when i filled out the form using the advice in the guidebooks he needed more support etc than his peers in almost every one so he qualified for middle rate care. I felt weird getting it as it almost didn't feel right that he should get it IYKWIM but I was completely honest on the form so he obviously meets their criteria.

have a lokk here

You need to download the childresn mental health guide. Its really long but should give you an idea whether your ds will qualify.

WOW that is comprehensive! A bit different from the official site I looked at which put me off straight away.
I'll have a think about it, I've downloaded the guide to show DH.

Thanks a lot

Hi Unfitmother,

I am glad to hear you are at least willing to consider applying for DLA later on. As I said we were honest, and consider the amount of help required by us to be within the scope of normal parenting.

As you said you have several months before they begin diagnosis. I am sure you and your husband will learn a lot more during that time.

One thing I sincerely hope you both learn is that having Aspergers is not the same as 'there's something wrong with him'. Aspergers in many ways is different mindset from what is the norm in society. Those with Aspergers are often above normal intelligence. Their unique way of viewing things actually gives them an advantage over their 'norm' peers.

Their ability to concentrate and often good memory allows them to do better accademically as they are not so easily sidetracked. Their need for rules and routine makes them ideal for a range of jobs, from scientist, accounting, military, IT, business to the lower end of the job scale. For instance while anyone could do warehouse work their ability to maintain concentration and commitment easily sets them aside and enable them to progress from the bottom up.

The problems with social skills while they become more noticable to them as they grow up become less significant as an adult. Yes they can come across a little weird at times but social circles change and they are not stuck in artificial situations where they are expected to get on with people where the only thing in common might be their age. Many go on to get married and raise wonderful children. From what I've seen to wonderful partners who do understand them, know they have Aspergers and fall in love with them for who they are, warts and all.

They can be very calm people in emergencies becuase they have learned coping strategies to get through life. Those coping strategies become habitual and eventually part of who they are.

Our children in many ways have the best of both worlds. They have the strengths of Aspergers and can often get by without people necessarily knowing they have autism, they just have their quirky ways.

But so much depends on how much we reinforce their image of themselves. And this depends a good degree upon on how we view our children. My main role in life is to get my daughter to the age of 18 with the qualifications, skills and confidence to decide on what she wants from life and to go grab it.

I don't doubt for a moment that she will get there, nor does she. Nor should you or your son

Thanks dgeorga, I'm confident that DS would cope with diagnosis of ASD should that to happen.
Despite coming at issues fron different angles DH and I are very together on this and both have every confidence in DS. His differences being so mild is hard in itself. He can be the life and soul of the party or can get really stressed out by new social situations.
We'll get there - eventually

Unfitmother, I am sure you will all get there. And by the time diagnosis comes, if it does, I am sure you will both be singing from the same songsheet when it comes to telling him.

Probably 'Help!' by the Beatles - Just kidding

My 12 year old Son has recently had cognitive therapy following increase in flapping type behaviour and some hand movements felt to be inappropriate by School (hands down pants often as needs to move hand about often). Also, finds it difficult to make friends, and goes very "spacey" if expected to concentrate for any length of time. Fidgety and tired if made to concentate but overall was a good kid.. He found therapy useful but as a Mother I felt a lot of emphasis, quite rightly, on home environment but also had a terrible concern that some of the comments may relate to my wanting Son to have more problems than he has. Bear in mind, we have had a number of contacts from schools current and previous, due to poor social interraction, some disruptive behaviour. I am willing to do anything to assist my son but am fearful of continuing with this therapy. In my own professional life I supported families some members of whom ended up with "Munchausens type" diagnosis on parents etc.

Has anyone else had this type of experience/ Or is it me being oversensitive. Left feeling a terrible Mother. Therapists have mentioned autistic traits and OCD but never received anything definite. Have always tried to avoid diagnosis of any possible issue due to fear of labelling. Now worried that both of us will be!!! Upshot is; Son advised to bring issues to surface. Good advise you may think but sadly he has now been involved in three fights in as many months since end of therapy. Obviously he has interpreted the advice incorrectly but I am concerned that some of the therapists advise has appeared to negatively alter our own relationship. Appreciate this happens with all kids at some stage and working on it but has anyone else had a "mixed" experience of C.T. Perhaps its me.............