Not being taken seriously

[KarenG]

We are in the very early stages of looking into whether my 6 year old son has Aspergers so I havent told many people. But a couple I have told seem to think that all I want is to 'label' him. Has anyone come across this kind of response?

 

We are just looking for support and understanding really. If I wanted him to have a label Id just stick with the ones hes already got at school which are 'lazy' and 'disruptive'

[Stella63]

Hi Karen,

 

Yes, there are always people who think a label is a bad thing but from my own experience it has been all good. I had been banging my head against a brick wall trying to get OJ's primary school to acknowledge there was a problem and it wasn't until he had a breakdown in year5, when he realised that he was different from his 'friends', got the diagnosis and was then able to use the internet and books to find out about and develop an understanding that he was Aspergers (and all the other co-morbids!!) so that he could make some sense of himself.

 

I just wish I had done the same earlier with my eldest son,who had the same labels of 'lazy', 'disruptive' and 'the naughty boy'. Unfortunately, I went along with these labels without questioning why he was behaving in that way - he was dx'd Aspergers at 14 and then ADHD at 15 and this was a little too late for him - he had developed strategies to avoid school work and went down the school refusal route and has ended up with virtually no qualifications and is pretty much unemployable because of drugs convictions and other bad choices he has made.

 

I would say to you to fight for the labels and the help it will then give you. And as your child gets older, the problems change and if you have the appropriate support in place, it helps you, your child and the school.

 

Stella xx

[KarenG]

thanks Stella

 

We think my eldest son may also have it. Since primary school there have always been problems but things peaked when he was about 11 and since then it has been a pretty endless round of counselling and seeing psychotherapists etc (he is almost 17 now). But so far nobody has come up with anything. Yet after looking into Aspergers it is him to a tee. But as with my 6 year old....I am left wondering how so many professionals can not see what we see (Ben my 6 year old has had speech and language therapy and been seen by the Ed Psyche) so I can see why people dont follow it up as if the professionals are not seeing it then it makes you feel that you must just be a bit paranoid or something!

 

I couldnt help notice your signature....my partner is also convinced he has it too!

[SuzyQ]

Hi MY DD was dx at about 14 with AS and just now adhd and we also think BPD some people have said she hasn't got it as she doesn't show typical signs.....of course she is female and most of the things they look for are from male's having it!! She does have it, but doesn't want to, she wants to be what she thinks is normal!!! I wish she had her dx earlier as now its a fight to keep her in the residential school we got her into as the 16+ team of SS said the placement was not long term, she has been there 10 months and just starting to settle down!! they were never at meetings so its a nightmare, she has had no secondary education as before in mainstram school she labelled naughty and disruptive rude and agressive!!!

So i wold say push push push!!!!

BTW I have alot os signs of it, and think i have it, i have even done an online test which i scored about 120 out of 200 in favour of AS I have some NT traits and some AS traits! knowing this makes a difference I now know why my husband suprising me and taking me out to dinner causes me to have panic attack..etc... and part of me wonders if the label would help me, but i have been on a sharp learning curve about it with my DD and wouldn't know where to start.

 

But don't give in you know your child, it is drainning but it will be worth it to get him the help he needs.

Suzy

[baddad]

Hi Karen G/all -

 

Not in any way challenging anyone's diagnosis or anyone's intentions to look into the possibility of diagnosis etc, but just wanted to add the observation that there seem to be some 'either/or' assumptions in the thread so far - children being either 'lazy, disruptive, naughty, aggressive' etc or Autistic. The reality is that these things are not mutually exclusive, and assumptions that all challenging behaviours are part of autism does no favours to the child or the parent or wider society. Autistic children are just as capable of being naughty, disruptive, rude, lazy and aggressive as non-autistic children, and are just as capable - as Stella has highlighted - of developing 'control' strategies based around such behaviours. Identifying those challenging behaviours as part of autism, and making overcompensatory allowances for them based on those assumptions will only lead to escalation: The progression highlighted in Stella's post does not, sadly, only apply to those with late diagnosis, but to many thousands of early diagnosed Autistic children and NT children too.

The reverse is also true, of course; that non-autistic people can also have reasons - medical and social/environmental - why they might behave in naughty, rude, disruptive, lazy and aggressive ways. Overlooking factors contributing to those behaviours in pursuit of one all-encompassing 'stock' answer is also likely to result only in an escalation.

 

So coming back on topic, my own advice would be to look for reasons why your son might be behaving the way he is behaving rather than a 'label' (as your friends put it) to define the behaviours. Those reasons may include autism as a contributory factor, but autism is/will not be an explanation in itself, nor provide any solutions. If you are now widening your definition of autism to explain the difficulties your older son and husband have encountered in their lives too then probably, despite the genetic predisposition, your focus has become quite narrowed.

 

Hope that's helpful

 

L&P

 

BD

[call me jaded]

Just to put another perspective: education is entirely labels-led, so so unless you do receive the (a) label support won't be forthcoming.

[Sammysnake]

When we saw a paed at age 5 (recommended by pre-school SENCo) he pretty much brushed me off saying there were 'signs of mild developmental co-ordination which would improve with support' (no mention of what 'support' means or where to find it) and he told me to my face in his line of work it was a pleasure to meet a child so confident and with such good social skills! It was hard because I wanted to believe him but also still felt sure there was something not quite right going on although none of her teachers agreed, nor her dad. It was really hard knowing whether to push or not or trust that everyone else was right and I was wrong. Eventually, five years later we get a teacher on the ball who recognises the same issues as me, puts support in place and fills in a detailed social and emotional questionnaire to send back to the paed. This time he says 'clearly AS and I'm really sorry I missed it before'. He also said all the support systems I'd been following myself (learnt from the internet as a result of research leading me to AS a few years ago) had meant she hadn't lost any time support wise despite him missing the diagnosis.

 

My husband was really difficult all through these years, like your experience thinking I was seeking a label for no reason. He thought it was my over protectiveness that was causing our daughter's difficulties. It's a difficult line because it's important to listen to the professionals and not pursue a diagnosis that isn't there just because you think it is but on the other hand, the professionals are only human and do make mistakes.

 

My advice is stuff what other people say, if a diagnosis comes through they'll have to eat their words anyway (my husband has been brilliant since we got ours and all the tension and battling has gone). Just make sure you get as much evidence together before the appointment as possible and make sure the professionals get it ahead of the meeting because they don't get much time with the child. In our first meeting I felt the paed had pretty much made his decision before he even met Beth.

 

Not much has changed so far since we got our diagnosis but it does mean we can now access available support when it's necessary and I feel happier that support will be available at Secondary school with our 'label'. A label is a tool that you can choose to use as and when, it's not tatooed to my daughter's head - she tells people that she wants to and I occasionally tell people who really need to know. It's good to have a proper name rather than saying she might do this or that but not being able to give a reason.

 

Good luck, I hope you manage to find the help you and your child need. Sam

Edited August 20, 2010 by Sammysnake

[chris54]

I feel that my sons autism was overlooked by his school (By us as well) because he was/is well behaved and cooperative.

He was/is seldom naughty at school or at home.

What led to him being diagnosed was his lack of academic progress.

I would go along with what baddad posted.(Was going to add a lot more but havent got the energy)

[KarenG]

thank you for your replies everyone x

 

I do appreciate what you are saying Baddad..I absolutrely agree its not a case of either/or ...but please bear with me..I am new to all of this and dont mind admitting that I am a complete stranger to all of this and its a bit scarey. And I dont mind admitting that everytime I read a symptom that my son has displayed I probably am guilty of slotting it into that category because at the moment I dont really know what else to do...I suppose its a bit like little lights are coming on every now and again! lol

 

Certainly with Ben the big catalsyt for this is his lack of progress at school compared to his peers. His behaviour in the first 2 years I have always just put down to his quirkiness and the fact he stayed at home with myself and/or partner until he started nursery so wasnt used to being around others. But in Year 1 its become quite apparent that something isnt right.

 

Anyway..onwards and upwards..I appreciate ALL advice given and will take everything on board. I havent even scratched the surface yet of what I need to know. Thanks again for listening and taking the trouble to reply x

[LS2242]

All I will say is a parent knows their child best. If you feel there is a slight possibility - follow your gut instinct. I left it all too long until in the end I couldn't cope with the behaviour and the OCD traits. After a referal from our gp to CAHMs and some assessments it turns out he has AS. Something I had never heard of before. This gave me shock initially and then strength, that although his behaviours are quite challenging at times, there was sometimes more reasoning behind it. It did not / does not in any way excuse his behaviours however as a parent I handle situations with a more understanding approach. A good example I think is only something that happened last week.

My son and I went to CP last week and we where doing some work on feelings and emotions. The idea of the work was to get my son to recognise how is body is feeling when he BEGINS to get frustrated so that he could recognise the signs and be taught when it is time to remove himself from the situation, (this in turn reducing anger outbursts) however as the work began and continued it was crystal clear that he did not know the emotions at all. Something no body including me had ever picked up on. How can you teach someone to give the card to the teacher if they are stressed / anxious / getting angry when they DONT KNOW themselves. After seeing the CP today we discussed our findings last week and he said it is them un spoken rules that he has missed and even with support he admits it may take two years to teach him this. It does explain why the reward systems do not work sometimes in our case anyway. This in turn will change my way of doing reward charts etc.

 

Follow your instinct, it may be an ASD it not be, but get a prof opinion. If anything at least you will know where you stand.

 

Best of luck x

[Suze]

Hi Karen , I can relate to your opening post alot.In the early years at primary we were constantly asked to come into school because our son was,nt finishing work, daydreamed all the time , could,nt concentrate on tasks , shouted out , would,nt wait his turn, could,nt sit still etc.There were lots of things going on, at first it was put down to his age, as he got older though his teacher in yr1 and yr2 mentioned it was laziness and he could,nt be bothered, was naughty and disruptive etc.It took a new head who highlighted dyslexia , then a breakdown in yr3 and referral to camhs for an ed physch to go in then he was statemented and dx with ASD, sensory processing disorder, dyslexia, and auditory processing probs.They did question ADD but by that time another dx would,nt have made any difference.We needed the "labels" and diagnosis to get him some help in school.At this point he was being kept in most dinner and breaktimes as he had,nt finished his work during class time.He had to finish his work during his breaks.Most of this time he spent crying, this and constant telling off by the teacherbrought on the breakdown .After the ed physch had been in it became obvious from their observation that he really struggled to focus in the noisy classroom , he found it hard to concentrate due to the noise and visual distractions.After he was statemented he had a special work station set up and an LSA who helped him stay on task . Things improved , but it was,nt till yr 7 and a specialist placement at high school that things really became better for him.The biggest impact anything has had on him though in all the years ,is to be with people who have a true understanding of autism and how it impacts in an educational setting.Every child will struggle with different aspects in the classroom , its very difficult if Teachers are claiming your boy is lazy and disruptive , and you just want them to look at what else could be going on besides what they see as bad behaviour.My son was,nt lazy he just could,nt focus on his work because of the noise, and he struggled to write more than two words because he could,nt work out how to spell or form the letters correctly.I hope you get some answers for your son, best wishes suzex.

[baddad]

thank you for your replies everyone x

 

I do appreciate what you are saying Baddad..I absolutrely agree its not a case of either/or ...but please bear with me..

 

Hi again Karen -

 

just wanted to reiterate that I'm in no way suggesting it is 'wrong' in any way to want answers or to look for them, or to include autism in that search for answers. Whatever is at the root of your son's problems I really really do wish you - and any other parent's/children in the same boat - the very best and hope that answers are forthcoming. And yes, it is scary, so take it easy on yerself!

 

 

L&P

 

BD

[Sally44]

I think that only thorough observations and assessments by professionals such as a Speech Therapist (for language and social communication skills), and Educational Psychologist for educational difficulties, an Occupational Therapist for sensory issues, or gross/fine motor difficulties and a developmental paediatrician and clinical psychologist can come to any conclusion about the child's needs.

Every child is different and will respond differently to any problems they have. You could have 5 children (even all five of them on the autistic spectrum) and each one might respond differently to social interaction eg. one might be controlling, one might be nervous and avoid interaction, another might attempt to join in but not have the skills and keep failing, another might have their own rigid interests and want to impose them on others, another child might be agressive towards other children etc etc. And the skills each child would need to develop and improve in just this one area (social communication) would be different.

Bad or disruptive behaviour is not exclusive to autism. However fear, frustration, and lack of understanding can cause autistic children to use whatever means they have available to respond to the situation in hand. And that can range from passive to agressive and every shade inbetween. The good news is that with the right professional and the right level of support or input, most children do make alot of progress. But that does not mean that many skills become automatic to them (as it is for us), because it isn't. It becomes a learnt process and skill.

 

As you've already said, everyone gets labels (good and bad ones). And getting a diagnosis will help everyone involved with your son understand his areas of difficulty better. And as Jaded has said, access to supports and professionals does tend to go on the medical approach, which does require a diagnosis.

 

I would recommend you contact the National Autistic Society and see when they are doing a Help course in your area. These are for parents of children that are newly diagnosed or suspected of being on the autistic spectrum. It will give you alot of information and advice, especially about the Special Educational Needs process within schools/LEAs.

[Sally44]

I would also add to go with your gut instinct.

No parent wants to hear that their child has anything worthy of a diagnosis. So to be told "not to worry" or to "wait until they start school, juniors, secondary school" etc is what alot of parents want to hear. That things are okay or not as bad as the parent fears. However the only way to find out is with professional observations and assessments. So always request that these are carried out and that things are not put off until later.

The SEN process takes a long time. From initial observations to a diagnosis may take 1-2 years. Then once the diagnosis is given it takes further time to get supports in place. In some cases this takes years.

From my own experience, the time it takes from a need being identified to it being supported in school usually takes around a year.

Remember that supporting your child in school with professionals or therapy costs the school and LEA money. So it is not 'independent', and the professionals that observe and write reports work for the organisations that have to fund that support they recommend. That is not to say that all professionals are useless because they are not. Some are very good. But you need to get professionals to put their findings and recommendations in writing. And you need to learn and proceed through the Special Educational Needs process.

The Help Programmes are a starting point. The diagnosis is the beginning, not the end.

You can find and download a copy of the SEN Code of Practice from the top of the Education Form in the publications. This will take you through School Action, School Action Plus and Assessments for a Statement.

 

It is worth looking at the areas that would trigger any of those stages. They are not just academic difficulties. They include speech and communication/social interaction difficulties, emotional and behavioural issues, academic difficulties, sensory issues. So don't believe anyone who says otherwise.

 

At School Action Plus a child has to have an Individual Education Plan which will have around 3 targets on it that the child will be working towards. The child's progress on these areas needs to be monitored and targets need to be SMART (specific, measureable, achieveable, relevent and time specified). You can contact your LEA's Parent Partnership for help with this. The PP can come with you to any meetings you have in school and can advise you on whether the targets are SMART. If your child is consistently not meeting the targets, then you can use these IEPs as part of your evidence for requesting an assessment towards a Statement. This is all stuff for the future. But the path is the same for everyone and children are at different stages of the SEN process depending on their levels of difficulty and needs.