The passive child/pretending to be 'normal'

[vjmac]

Hi all,

After several trips/phonecalls to the LEA, talking to MP's and councillors and asking them for help, you will not believe the type of assistance they have granted my daughter for afternoons. (She currently has an SEN aux for 10hrs per week in the morning but is struggling in the afternoon.)

Anyway, they plan to bring in a teacher from another school who assists with learning difficulties (but not ASD)on Monday afternoon, a different one on Tuesday, no one for Wednesday and a different one again for Friday.

Is it just me or are these people absolutely clueless?

Back to the drawing board once again! Just when you think you're getting somewhere.....!

Vicki

[CarolJ]

Vicki

 

I totally sympathise with your situation and yes, I have to agree THEY DONT HAVE A CLUE!!!! - where are you by the way? Which LEA

 

I had a meeting yesterday for Scott for school placement. There is no school that is suitable for my son in our borough and he has to go outside the borough to go to school. I asked the Assessment Officer, ASD specialist, Head of Early Years (why not??? Surely my scott is not an isolated case). Told me that they are aware of the problems and said they have had an explosion in ASDs and they cannot cope. They have the same problem every september intake. I asked why isnt anything being done? They answered lack of funding and they are looking into it!

 

I have had an offer of an out of borough school.

 

He should start this September. This school can offer him a place September 2006!!!! - he is 5 this October!

 

They have known about my son since he was 18 months old - so they must feel they have been rushed into this one and perhaps need a bit more time [HEAVY NOTE OF SARCASM] - sorry

[fairies72]

Hi All

Update again as far as the questionnaire at school is concerned my daughter is fine , no probs except she is a control freak!.She dominates the converstaions in the playground,likes to take control of any games and prefers playing with the younger kids , cos (this way she can be in control).Was even banned from playing with one younger child as it was obsessive.But there is nothing wrong with her!!.

Oh one more thing , they have 2 teaching assistants , that she craves the attention of.They are trying to put a stop to this , because it isnt fair on the other students if she has all there time!.Is is me ? or does this not tell them anything.

Atleast the paediatrician is on my side.She tried ringing the school while i was there , as they had to fax the questionnaire (which they had had 6 weeks to fill in and send back.Senco was off sick and class teacher had no time to speak.

This means yet another meeting.Its not that i dont believe she holds it together at school , its more that i know how she is on her return.They just keep saying she isnt like her brother.Doc said give it 3 years then they may actually realise.

Lisa x

[pookie170]

Of course shes not like her brother!!

Even if you look at two NT siblings, when are they ever just like each other, personality/trait wise???

 

Have you tried printing stuff on this subject to show the school? Or finding relevant passages in books for them to read?

At least the paed. is trying to help you.

Good luck, pet. Try to keep your chin up, I know how frustrating it is when schools don't listen...in my case it was a nursery, but I know how you feel all the same. Your daughter sounds rather like my son....he likes to monopolise the adults in the classroom, and prefers older/younger children than his peers.....

How can the school say this is not a problem?

Good luck!

Esther x

[fairies72]

Just to add that after yet another appointment with senco and peadiatrician together, i am still no further on with finding out what diagnosis my daughter will have.School say that after certain tests the only indication they have is of ADHD.Paed still thinks Asperger and i also have suspicions now of PDA.Paediatrician honestly admitted she can't make a correct diagnosis , so is referring us to G.Baird.I hear she is very good, though a very lengthy waiting list.. so heres hoping!

Lisa x

[nellie]

Lisa

 

That's great news. Gillian Baird has a very good reputation.

 

You could ask her if you can be informed in the event of a cancellation. It could mean you get an earlier appointment.

 

Nellie x

[pookie170]

Good luck, Lisa!!

We're rooting for you and your girl!!

 

Esther x

[lisa]

Lisa,

 

Gillian Baird's secretary is really nice. If you phone her she'll tell you roughly how long the waiting list is and you could do as Nellie said and ask her to let you know of any cancellations. My friend's little girl has just seen her and it took 8 months from referral to being seen. I don't think there's an LEA in the country who would dare to argue with a diagnosis or recommendation by Dr Baird!!! Are you from London?

 

Good Luck with the assessment.

 

Lisa

[fairies72]

Thanks everyone for your replies.Im from kent actually but both my kids were born at guys.

Lisa x

[baddad]

Hi Fairies!

 

Noticed you're in kent... If you are in the "top end" (i.e. Maidstone down to Dover!) you've got a great information resource to hand - The Parents Consortium. Your local social services will have their number, or the NAS. Will maybe help directly, or possibly "fast-track" you to partnership with parents, who could help you in getting meaningful dialogue with the school rather than that silly semantics rubbish you get drawn in to 1 to 1.

 

Middle bit (like me in T.Wells), and you've really only got the Children With Disabilities Team at Tonbridge social services, who do tend to have their heads up themselves somewhat, and who get very precious when you tell them so!

 

I think the consortium does a bit around Gravesend/Dartford too, but if your in the sevenoaks area it's pretty dire I'm told.

 

Silly, isn't it - one tiny county, and what a difference a few miles makes...

 

Good luck with your referal.

[pingu]

Hi I have just posted this in another topic, but as it is appropriate here, i thought i would just do a quick copy and paste (Marvolous invention)

 

I was just reading another topic 'passive child/pretending to be normal' a short while ago, it got me thinking of the converstaion i was having the other day with Kierans Pyschologist. She also saw Liam (my eldest) when he was 3 (he is now coming up 12) And she said she was going to dig out his reports, and make sure they didnt miss anything with liam (bit late now i say ..)

I have always said (as have most people) that liam is a brilliant actor, he has the ability to make people laugh and he does understand people... But he doesnt understand himself, from age 1 he has had a temper problem, bowel problems, Facinations (latest one Death) all sorts off things, but he was as good as gold in the assessment, as he is at school, no problem what-so-ever. Yet when he gets home all hell breaks loose, im sure he and kieran feed off each other and then 'share' their meltdown.. I have always wondered about liam having ASD (AS) but have been told by so many professionals that AS children 'Cannot just switch it on and off' so therefor because he was good at school and got on with his work no one believed me !! .

 

Take care

Shaz

[nellie]

Shaz

 

Further to my previous posting. I just wanted to let you know that there is a book, written by Liane Holliday Willey, a woman with AS, she entitled it 'Pretending to be Normal'.

 

I am not suggesting that you use this book as evidence, just wanted to show that it is common for people with AS to pretend.

 

Nellie.

[nellie]

Shaz

 

I have found this for you.

 

Taken from: Meeting the Needs of Children with Autistic Spectrum Disorders

By Rita Jordan and Glenys Jones

 

When life at school and home is going well for the pupil, and parents and staff are receiving positive reports from each other, it is likely that parent-staff relationships will be easy to develop and maintain. However, both staff and parents need to prepare for times when the child's behaviour or performance might be viewed as a problem either at home or at school. Staff-parent relationships might then be more difficult. It is possible, for example, for each to blame the other for something they are doing or not doing with the pupil. It is important in these instances to gather information on the nature of the problem and on the factors which might be contributing to this at home and school. It can be easy to take the quick route and guess what the cause might be, without making adequate enquiries and getting clear, factual information from all involved. Engaging in speculation is not helpful and is likely to lead to the apportioning of blame and ineffective solutions. This is particularly true when the child's behaviour appears to be very different at home from his or her behaviour at school. Pupils may pose no major behaviour problems to staff and be very undemanding and well behaved in school. When they arrive home, however, they may engage in challenging behaviour towards their brothers, sisters or their parents. It seems as if the pupil manages to contain all the anxieties and difficulties experienced at school and releases these on returning home.

For some children, the reverse scenario is true, particularly when the child first starts attending school. The child may be relatively easy to manage at home, perhaps because the environment is faily constant and familiar and there are few demands to be sociable or to engage in tasks which are not interesting to them. In school, they find themselves in what is to them a noisy, confusing, social environment where people attempt to communicate with them in ways which they often do not understand. In additon, they are encouraged to engage in tasks which may hold little interest or meaning for them. Their reaction is to try to sabotage the activity or to escape or to do nothing, all of which challenge the teaching staff. When parents and staff hear very different accounts about the same child, they may find it hard to believe or they can be quick to blame the other. It is important to acknowledge that very diffferent behaviour at home and school is a phenomenon found in some children with ASD (as it can be in others).

 

Further infomation on this subject.

 

' Be aware of two characters' is on page 39 of Tony Attood's book - A guide for Parents and Professionals.

 

Be aware of two characters

 

The child may be very conscious of the necessity to follow the codes of conduct in the classroom and to try to be inconspicious and behave lid the other children. This pressure to conform and retain self control can lead to enormous emotional tension, which, like a compressed spring, is released when the child reaches home. Here the child is a different character, almost a Jekyll and Hyde. This is a feature of some children with Asperger syndrome and not necessarily an indication of the parents being unable to manage their child. It will help for the classroom teacher to have a range of relaxing or solitary activities for the child just before they return home. Parents may also consider a period of relaxation or energetic activities when the child comes home to dissolve their tension from a long day at school.

[tess]

Hi all

I have read al the posts and cannot believe the relief i feel , as my 8 yr old boy is completely compliant and passive at school, but as soon as he comes home he flapps , makes noises, goes to his room talks to himself and his imaginary friends.I am awaiting a record of needs (scotland).The school he attends do not believe he has aspergers, but because the Ed dept have aknowledged the diagnosis and acepted it , the school have no chioce but to go along with us, but you can tell they are not prepared to offer much in the way of an sen auxiallary.The headteacher and deputy both admitted to me that they have never come across an aspergers child before, this highlights the need for these 'set in their ways'teachers to get training so they can understand the complexities of this condition.I think they probabaly have taught asperger children but have not recognised it.

 

I feel as if my sole purpose in life now is to educate the world, i am so frustrated as to the lack of knowledge out there, and prior to all this i was a happy go lucky person, but now i am a tazmanian devil most days, with a disturbed sense of humour

 

Great to be able to express myself with people who understand

 

Cheers

Tess

[nellie]

Welcome to the club Tess

 

Nellie. x

[Elanor]

Hi Tess

 

I find it amazing that so many professionals and teachers don't recognise the passive/pretending type of AS. I've met several professionals who I respect, and who have in-depth experience of the range of children affected by AS, and they are not surprised to see this type, or consider it contrary to the diagnosis of AS. I have quoted directly from Tony Attwood's book to the school and Educational Psychologist, and after that they found it a bit hard to tell me that my child doesn't have any problems.

[nellie]

Hi Tess

 

Just because school is not having a problem with a child, it does not mean that the child is not having a problem with the school.

 

 

I suggest you do what Eleanor did, show the school evidence documented by the experts. I have posted a couple of paragraphs about the passive child pretending to be normal on this thread, written by experts. You could also ask them the buy some books, especially Tony Attwoods and ask the school staff to read them.

 

Another very good book is A Martian in the Playground by Clare Sainsbury.

Clare has AS. The book gives accounts of how Clare and others with AS struggled with school.

 

Good luck

 

Nellie. x

[Elefan]

Just because school is not having a problem with a child, it does not mean that the child is not having a problem with the school.

 

Spot on!!!!!!!!!!!!!!!

 

Elefan

xx

[tess]

Hi all

 

I have read everyones reply and was wondering , wether there was any other resources , as the tony attwood only has one paragraph, and i feel that the school needs more than this, as they are completely incompitent.

 

I want to give them as much info as possible, as a teacher with some training in Autism, from communication and lang unit, has given me feedback on my child at school and according to her he is having NO PROBLEMS AT ALL

 

I have said he is passive ect, but they have no conception of this

 

I would love to shov (give) as much info as poss in their direction.

 

Cheers

Tess

[nellie]

Tess

 

I can't think of any other evidence at the moment.

 

If you have a look at the following link, you will find that one of the experts, Rita Jordan answered some questions on the passive child.

 

QUESTION TOP AUTISM EXPERTS ONLINE, DON'T MISS THIS INVALUABLE OPPORTUNITY

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=897

 

I have pasted them for you as the site continually refreshes which makes it very difficult to view. If I can think of anything else I will let you know.

 

Nellie. x

 

 

The pupils behaviour at home and school / Jekyll and Hyde behaviour.Author : Helen Lodge., 4 Oct 2004 11:06 Dear Professor Jordan,I find it amazing that so many professionals and teachers don't recognise or understand the Jekyll and Hyde behaviour of children on the autistic spectrum. I am a parental supporter for my local autistic society and find this to be a huge problem for parents and their children. Parents are having great difficulty getting professionals and teachers to understand that their child is simply following the codes of conduct and trying to be inconspicuous and behave like other children, or copying the behaviour of others to fit in. Provision is not being provided for these children as professionals are not seeing the needs of the child. Some of these children are suffering greatly and having emotional and mental health problems, sometimes ending in a complete breakdown before the professionals realise there is a need and that the child is not coping.Even when parents try to have a positive relationship with staff, they are often perceived to be neurotic with little understanding of their child. Some parents eventually think this is true. I would be grateful for any advice you could give which would help parents in this situation.

 

 

 

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Behaviour at home and school /Jwkyll and Hyde behaviourAuthor : rita jordan, 4 Oct 2004 15:05 It is very sad when school staff take no responsibility for how the child is in total - at home as well as school. There has been so much work on the importance of regarding the child in an wholistic way and taking account of both environments, that it is somewhat shocking that the message is still being ignored. It might help if you could keep a diary (or help others to do so) so staff can see the detailed thorough way you are charting behaviour and can perhaps even begin to see the connections themselves between what happens at home and school. I am sorry to keep refering to Educational psychologists but these are the people who should be making the connections and helping others do so. Depending on the role of your local CAMHS, (some have an open-door policy after initial diagnosis with ASD) it might also be possible to involve them and for the local clinical psychologist to offer support to the school in understanding and meeting the emotional and mental health needs of the child. Show replies to this message (1 reply) Reply

 

 

 

 

 

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My sons school are blind tooAuthor : Helen, 4 Oct 2004 17:23 I am not alone then?My son is 9 and has dyspraxia and aspergers, he attends a mainstream school.This week we have an appointment with CFACS who I think are the same as CAMHS because he has been so depressed and angry and as well as constantly saying the worst things about himself he talks of suicide and hits himself as well as trying to strangle himself with his hands.I informed the school of this back in June, they did NOTHING they did not suggest they could refer him or anything.Instead they keep telling me he is fine in school and that when they ask the whole class if they are happy he says yes !!I even printed off and sent in copies of information about the Rage Cycle to show them him appearing "fine" in school was part of the problem and did not mean he was ok at all.Their reaction was "But he's ok in school, we can't fix something we can't see"I asked the one teacher I knew my son trusts to have a chat with him and see what she thought, she told me he is not happy at school and that she felt he could be clinically depressed as he could not seem to explain what exactly he was feeling or why.She even reported this back to the SENCO who has totally ignored it.How can schools be allowed to treat parents and the most vulnerable children like this? Reply

 

 

 

 

The Passive ChildAuthor : Vicki McCarthy, 4 Oct 2004 12:22 Dear Dr Jordan,I have a 6yr old daughter who appears to cope in school but who is either totally withdrawn or aggressive when she comes home. I have been told by professionals that if the problem were a school one then the cracks would start to appear in school, therefore I am assuming that they feel the problems are at home. Apparently once I leave the school she is 'great'. I am not convinced and think she is struggling. She has full time SEN support. Where do I go from here?

 

 

 

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Re: The Passive ChildAuthor : Louise, 4 Oct 2004 15:20 I find it shocking that the professionals working with your daughter are trying to 'pass the buck' in this way; surely it is evident that we see all individuals holistically, and thus look at all patterns of behaviour when trying to support a child. I mean, taking me as an individual - I know that I can cope with a stressful day of work whilst I'm there, but the signs show when I get home, where I know I am safe. Just because these patterns of behaviour tend to be more extreme in children with autism, it doesn't mean that the link between the school and home environment should be overlooked. Have you involved an educational / clinical psychologist? Hide replies to this message (1 reply) Reply

 

 

the passive childAuthor : rita jordan, 4 Oct 2004 16:21 I endorse the comments here and the suggestion that you seek the support of an educational psychologist. I would also ask you to think about the SEN support. This person may be excellent - in which case you should be having mutual chats and learning strategies from one another - or it may be that this person is untrained and far from 'supporting' the child is actually helping to cause a build-up of stress that is coming out at home. In any case a full time support always carries the danger that teaching staff do not get to know your child and so you do need to work with this person to see how her /his time and skill can best be used. Reply

[CarolJ]

Hi Nells, funnily enough I was having this same conversation on Wednesday. I had a meeting with ed psyche and autism coordiantor and Senco at Emma's school.

 

They asked me why I thought Emma was on the spectrum.

 

Okay firstly Ed Psych told me Emma gave him good eye contact - although not prolonged! Okay, so does scottie give good eye contact, next question! Many kids on the spectrum do give good eye contact.

 

If I stare at Emma too long she tells me to "stop staring" she hates it. She hates people staring at her. Is this on the spectrum.

 

He then said he feels she has good social skills in that he saw Emma smiling at other children. I tried to explain about learned responses, in that Emma's smile is not a genuine smile. She often smiles when she is unsure what to do, sometimes in response to a direct question as she knows a smile is accepted, its a coping mechanism.

 

I then explained how Emma is in that she appears to be placid because often she is not sure what is expected of her. She often appears to be giving eye contact but in fact she is looking through you rather than at you. I got the feeling he was assessing me because I made a point of staring straight into his eyes when I was talking and then demonstrated what Emma did in that she does not focus. A couple of people have suggested a squint but I know with Emma it is a coping mechanism.

 

I am now compling a report, what really made me uncomfortable is that every time I made an observation about Emma they both looked at the Senco as if to say, is that right? Senco was nodding.

 

I said Emma was placid at school but at home was a different story. The autism coordinator smiled at this, I presume she is familiar with the jekel & hyde scenario.

 

Ed Psych said to wait and observe Emma. Here I lost it

 

I said I think you have had long enough. Her DX is wrong. She is falling further behind her peers. But Ed Psyche said diagnosis would have to be medical, so back to peadiatrician.

 

Ever get the feeling you are running in circles and getting nowhere fast?

[nellie]

Carol

 

I am concerned about Rita Jordan's answers, she thought the EP's would be able to sort out many of these problems. Unfortunately many EP's only understand ASD's by the book and many think they know more than the parents. As everyone is an individual and presents differently the parents are the true experts on their children.

 

Maybe if you took some video footage to show to the professionals or invited them to see Emma at home, they might get the picture. It's infuriating that they don't listen to what parents are saying, it's as if they don't believe us. No wonder parents are being diagnosed with Munchausen Syndrome by Proxy, why don't they just accept what parents are saying. We don't want our children to be this way!!

 

Sorry they are making your life so difficult. Hang on in there, don't let them grind you down.

 

Take Care

 

Nellie.

[fairies72]

Hi

Firstly thanks all for any replies and badad im nr gravesend.

Just thought id give an update on my situation , as this post is ongoing thought it best to post here.

I have an appointment with G.Baird on 18th oct for my daughter and to be honest it hasnt come a moment too soon.

I went to see my daughters teacher last week , to check on her progress before i go and again same report as always.She shows no signs of being distressed at school or a lack of understanding (must just be me that struggles with her , when its time to complete homework etc then).

Cant exactly put it any other way than she has been a nightmare the past few weeks.Every night after school she explodes into this child that i dont really know.

We have things hurled down the stairs at us , hitting , kicking screaming like you wouldnt believe and all for something as simple as not being able to get a sock on or a drink not being made quick enough.This can usually escalate to her brother joining in , he also has AS.He starts as the noise levels rise and he cant bear that.

I feel really sorry for my son at the moment, despite his AS he is having to take 2nd place as there is just no time to deal with both at once.Her behaviour being the worse.

I was kind of leaning more towards ADHD with my daughter, espec as the school see no wrong.Then the ed physch where i work tells me , that this would be evident at school if that was the case.So im back to square one.

Sorry to go on again, just been a bad few weeks i guess.

To top it off, now when ever her temper flares , its 'i wish i wasnt born, im so ugly and im going to kill myself comments' In any one thats scarey but from an 8 year old its very upsetting.

Fingers crossed for the 18th thanks for listening.

Lisa x

[nellie]

Hi Lisa

 

I'm really pleased you have your appointment with Gillian Baird, did you get a cancellation?

 

At least you know you will be getting a multi professional assessment, hopefully they will be able to make a clear diagnosis and give you some advice.

 

Good luck, keep us posted Lisa.

 

Take care

 

Nellie. x

[Zemanski]

Hi

This is really for Nellie because it is another angle on why kids with AS sometimes appear to be passive, so it's going back to the original questions.

 

I?ve been thinking about the idea of passivity in AS kids quite a lot, ever since Com was diagnosed really.

 

There appear, although this is obviously a bit of a generalisation, to be two types of passive AS kid.

 

The first seems to be passive in certain environments only; those kids who ?act normal? in the school environment but are entirely different at home.

There are all sorts of reasons why a child might do this; working so hard to fit in and follow the rules in one environment means that in the more relaxed environment at home they just have to let all the stress out (usually in the form of meltdowns or increased levels of ?stimming?) being the pattern that seems to fit many children who are passive in school.

Many of these children are not naturally passive but enjoy activity and in play are loud and busy and bounce around the house and garden in much the same way as NT kids (although they do generally play differently and tend to go to extremes more often which can be hard going in the holidays). For these kids meltdowns and stims are part of everyday life, much as tantrums are for any three year old. They have heightened or differing sensitivities which make them respond to external stimuli in what are often extreme ways and they seem to be constantly on the go, sometimes needing very little sleep.

 

But Com doesn?t fit this pattern except under extreme stress when he too brings it all home and lets it out. There are very specific triggers for this.

Instead he seems to be of a second type.

I haven?t met many of these kids, although I know a couple of adults I think were probably like Com as children (including his Dad), but they seem to be ?passive? right from the start and in all environments.

 

Com was quiet and content as a baby; he smiled but rarely laughed, hardly ever cried, and slept regularly (if not for as long as other babies).

From birth Com was intense. He wanted to be upright looking out at the world and only lay down to sleep or breastfeed.

So he wasn?t passive as such, more unresponsive to his environment ? he wasn?t bothered by much, just plodded calmly and steadily through life watching everything and taking it all in.

 

We knew Com was unusual; his language was well in advance of his peers and very precise (by 18 months, with a vocabulary of around 500 words, he was correcting adults who used baby talk with him and beginning to use full sentences), his maths was remarkable (asking for sandwiches to be cut into 32 pieces so he could calculate equivalent fractions at 2), and he was never naughty (at his 3 year check up I told the doctor, tongue in cheek, that this was the only thing I was worried about ? ?if he was naughty sometimes then I would know he was normal?). Before he went to school he had just one tantrum; at 18 months I took him to buy some shoes and the ones I chose for him didn?t have elephants on!

 

Physically his development was slow but he met the milestones we were aware of even though he never ran, climbed or jumped and still doesn?t if he can help it. And we were aware that he had no interest in his peers even though his interactions with adults and older children seemed good, if intense.

 

Com?s response to the world was not passive but it was a low-risk response.

He still lives by the tenet; ?if at first you don?t succeed, never, ever even think about trying it again?. He did only what he was sure he could succeed at so there was no way to see that he was struggling with anything.

In social situations and crowds Com seemed quite happy because he simply ignored them, as long as he didn?t have to participate he could detach himself and there were no problems. He wasn?t bothered by noise or bustle or change because he focused so intensely on what interested him that the rest was irrelevant. Com lived in his own head and interacted with the world only to feed his learning which appears to be almost entirely cognitive.

 

I think we must have literally glowed with pride at our wonderful, bright, exceptionally well-behaved, little boy!

 

It came as a huge shock when, in Y1, we realised Com was struggling with school.

We first noticed the academic, which, given how bright we knew he was, we could hardly believe. Physically he was quite behind by now too and this was hampering him in the playground.

Then the social problems came out and within 2 years of starting school Com had become a complete wreck. We suddenly had to deal with behaviour (tantrums, stims, self-harming, etc.) that he had never shown before and school didn?t believe us. It took another 2 years to show in school by which time Com was trying to kill himself.

 

The problem for Com with school was that he was no longer allowed to maintain his detachment and he had never learned to participate; at home he had been encouraged but never forced to take part in things that he might fail at but at school he couldn?t avoid risking failure.

 

When Com was 7 he was diagnosed with Dyspraxia.

I did loads of reading, the way you do, and ended up with an excellent book by Madeleine Portwood who was one of the leading experts at the time.

 

In her manual for parents and teachers (sorry can?t remember the precise title) she talks about 2 distinct types of children with Dyspraxia.

 

The first type runs at life and does everything, often badly. They flap and fall and knock things over but they join in and are as eager to get the most out of life as any of their peers, sometimes more so.

 

The other type is a group of low-risk takers who mask their disability by always erring on the side of caution, never trying to do what they know they can?t. This is a much smaller group but they are quite distinct in the way they respond to their disability.

 

Madeleine Portwood calls these types hyper and hypo ? they are either over-responsive or under-responsive.

Having been diabetic in one of my pregnancies these terms are very familiar ? if you are high on sugar you become hyper (everything speeds up as in hyper-activity) but if you go low you have a ?hypo? and can actually end up in a coma fairly quickly because your body doesn?t have enough energy to keep going.

 

The hyper and hypo types of Dyspraxia are fairly well accepted and Com clearly fell into the hypo mode.

 

So when he was diagnosed with AS and I started reading up on that I began to think about whether the same might apply to our AS and autistic kids.

There is no mention of it in any text I have yet come across but I have enough experience of Dyspraxia, AS and Autism to think that there might be something in it.

 

This is really a completely different issue from the masking things at school and letting it all out later (which Com does under extreme stress) but more about the child?s approach to life and management of their own disability.

It may also have a lot to do with the way the senses of autistic children interact with the world; many have very intense experiences because they are hyper-sensitive to external stimuli such as noise, texture, touch, smell, etc. but a few, like Com seem to have under-developed responses. Com, for instance, does not feel pain properly and can break a limb without noticing; it is almost as if he is cocooned from the world unless it insists on breaking down his defences and only then does he find he can?t cope.

 

Of course, Com does participate but only on his own terms and in his own fields of interest. Then the interaction is intense and demanding; Com has been working with an A-level Maths student, just for 15 minutes a week, for over a year. We knew they had been looking at differentiation and that Com was finding it fascinating, but the head teacher told us last week that Com had been really intense on this subject and had questioned Roy repeatedly until he had figured out for himself how to do integration ? this can hardly be construed as passive although he doesn?t do it in any other setting at school.

He is also quite prepared to stand up and question things he doesn?t agree with; no teacher is allowed to make a mistake or practice injustice in one of Com?s classes. It is often this sort of thing that triggers his meltdowns after (and now in) school.

The other thing he does that can?t be viewed as passive behaviour is to make sure he stands out in a crowd ? Com has short, blonde hair, spiked on top with a tail down to the small of his back and he dyes the top red (the first time it was neon pink!), he thinks his double purple irlen lenses are really cool and he only wears clothes with dragons on, preferably in vivid colours. He truly resents having to wear uniform because he does not see why he has to be like everyone else when it is quite obvious to him that he isn?t!

 

This is not the presentation of a child who wants to hide!

 

I still think of Com as a hypo type and I have met and worked with several AS/HFA kids who definitely fit the hyper type even though they hide it and try to fit in at school.

 

I was wondering what anyone else thinks about this as an idea ? it?s still very much one I feel is under development but I think it may have implications for how we approach different children on the spectrum.

 

Sorry it's so long - I think it may be the start of a thesis!?!

 

Zemanski

[nellie]

Many thanks for your reply, which I found very interesting. I?m not sure I have the time at the moment to give it the consideration it deserves but I can give my initial thoughts.

 

It?s thought that autism can be divided into three main groups, aloof, active but odd and passive (you can find this on Tony Attwood?s site). It may have been a mistake to assume that passive is the only group who pretend to cope. Maybe others can respond to this point.

 

My husband and two sons definitely fall into the passive group but they are all very different for many different reasons. One thing that they do have in common is the understanding of how they should behave and if they are unsure, they pretend!

 

I?m not sure I agree with the idea that there are two types of passive, I think there are as many types as there are passive people. I look at the description of your son and see parts that fit my youngest, parts that fit my eldest and parts that fit my husband.

 

My youngest son, now 24 had a complete breakdown when he was 20, which ended up with him being hospitalised. Initially I thought the breakdown was due to the problems he had growing up with an autistic brother. It wasn?t until he was 22 that I realised that I hardly knew him, he had been using coping strategies all his life that masked his difficulties. He was exceptionally well behaved! We gradually began to realise that he probably has AS, he?s having counselling and awaiting an assessment.

 

My concern is for the mental and emotional health of the person who masks their difficulties to such an extent that they do not have their needs recognised and met. There is also the problem of the professionals who can?t see the child?s difficulties and blame the parents who appear neurotic in their attempt to get some understanding and recognition. In some cases being accused of Munchausen Syndrome by Proxy (http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=239&a=2407 )

 

My eldest, 26, wasn't diagnosed until he was 19. I spent years trying to get professionals to understand his difficulties. This lack of understanding on their part resulted in huge emotional and health problems. His AS was masked by his other difficulties including severe dyspraxia, dyslexia, and sensory problems. I can understand how some people don't 'guite get it', afterall I was completely oblivious to my younger sons difficulties.

 

I don't necessary blame others for getting it wrong, indeed I don't feel any guilt for not recognising my sons difficulties but wouldn't it make sense to educate everyone to recognise the signs of pretending and coping behaviours, we may then prevent further problems. It is often the case that the parent knows their child best, but unfortunately their input is often ignored.

 

Thanks again for your interesting post.

 

If anyone has any comments, I would welcome them.

 

Nellie xx

[bid]

Wow! fascinating posts by both Zemanski and Nellie!

 

My 4 year old who is still undergoing assessments, so no dx yet, is very different from Auriel.

 

Auriel has ADHD too, so was always a rushing about little boy who wanted friends and has maintained a group of 3 or so from the age of 10ish. He has all the typical things...toe walking, poor eye contact, stims, etc, etc...Desperate to 'fit in' at school, but melt-down city at home before he left mainstream.

 

D. on the other hand doesn't have ADHD at all, and is very self-contained. He isn't frightened or shy with other children, and does interact with them a little but seems to have no desire to participate fully and he is very definite about what he does and doesn't want to do in a social context. He seems happy to watch. He also has lovely, appropriate eye contact, although with us it can be too intense sometimes. As yet, no melt-downs...

 

More, please!!

 

Bid

Edited May 16, 2005 by bid

[MelowMeldrew]

My son was diagnosed ASD 6 years ago, he's always been 'passive' at school, when he comes home it's usually WW3 as a norm. It was pretty clear to me the time he spends at school takes enormous effort and stresses him, so it's head down in chest exactly when the taxi comes for him,staring at the floor, and not speaking much at all. On coming home, it's BOOOOOOING !!!! he shouts he swears, he disrupts, everything. I've spoken to the school they say he passive, quiet, not participating much, then I show them what he does at home they can't believe it's the same child.

 

I've told them when you get the same there as we get at home, you've made a start and we can address things, nobody expects 'normality' (whatever that is, I've long forgot), but making things less stressful and including him in school things as a reality, isn't impossible, time isn't on our side. We all know at age 16 you're on your own and then some, especially as no support exists in our area, if you can't make the inroads at school when he's there, it will become near impossible when he's adult. At home my lad can and does refuse peer contact, so as an adult I can see, unless it's addressed, this carrying on when he's older. We're stretched now, we may break when he's adult doing the same thing, but with size and strength too.

 

At home he writes, he tries to draw things, converses and chatters away at us, he's a ball of fire and then some ! I don't think there's much doubt the school (Which IS an autistic Unit), has yet got a handle on him at all. The old adage stick him with peers and it'll work out, has failed so far too, he seems only to tolerate it, and then go back home to 'normality'. They don't stretch him, or really engage him as yet, they give him stickers and posters like "He worked really hard today", when the output clearly shows he did next to nothing, and isn't even on par with what he does at home. He's passive at school noisy here, he does little academic work there, he does at home, confusing isn't it ? I went to his infant school and sat in the class to aid the teacher, he did more in 1 hour with me there, than he had done for 6 months, unfortuntaley the school thought this counter-productive,he has to get used to school etc, soI stopped, but, so did HE.

[mom on a mission]

hi all , i was reading through the new posts and fount them very interesting as your probebly aware from other posts of mine my son is now 5 and attends a special school in a class with 6 other asd children he is very passive there apparently so much to the point that he shows hardly any signs of asd , i know it must be difficult for the staff to recognise that the child he is there is not the child he is at all, at home hes full of beans runs around non stop allways into somthing chatters away in a very load and monotonus tone of voice sings dances the works where as at school he is mute shows no signs of emotion only a slight smile on occassion and follows all instructions given to him ,at home the signs of asd are very obvious for example tone of voice, speech on his terms and only to get his needs met, very literal thinking with no reasoning, head banging, self harming,no sense of danger , lack of pain sensation, restricted diet , poor sleep the list could go on but it would take for ever as for his eye contact yes he does make eye contact but it is not apprpopiete he stares through you as if looking else where.Now back to school i have observed him at school and this is what i see, A little boy whos lost he looks like someone has taken his soul away he is nothing but a shell of my boys body he does not speak in fact there is no sound he does not look at me he looks over me his face has no emotion it is mearly just a face and nothing more he follows instructions slowly and carefully but not entirly understanding he is not my child infact he is not a child atall he is a pupett on a string waiting to be put back into the shadows where he can then out of the watchful eye of his master he can at last be a boy. a tear comes to my eye whilst typing this because as much of a handfull he is at home and no matter how many times a wish for five mins peace and quite to see him like that breaks my heart , he has no problems going to school but when he gets home from school he has to let 6 hours of built up emotion out 6 hours of not speaking out , 6 hours of not being who he is but mearly who he thinks he suppossed to be, and i for one would rather have him with all his difficulties obvious to the world but a smile on his face than to have him conform to what society would like to see and a shell of the boy i love and know so well. my only wish in life is not a cure for asd or world peace it is simply a wish for understanding of a child pretending to be normal , then may be my boy can be !

[bid]

MOM,

 

<'> <'> <'>

 

Bidx

[florrie]

When I saw this topic I really related to it so I thought i would add my opinion on this. My son although now 17 was extremely passive in school, he developed nervous tics when he went to school and when he came out he would have the most awful aggressive tantrums, I soon learnt because he didn't communicate well, it was a sign that something was wrong, the tantrums and agression would come and go depending on school experiences and once he had an amazing empathetic teacher and he did really well with confidence and self esteem and he didn't have the tantrums and was more communicative and less anxious for a while. Environment seemed to make all the difference to the exhibition of asd symptoms in my son, but unfortuately the positive experiences were very few and far between, if people had more understanding it would help our children so much.

 

I also am extremely passive, and it has become completely engrained in me, I can't say or express how i feel and sometimes I feel like screaming, how I feel at people, i think I did once but no one understood so now I don't bother. I had a breakdown once and went beserk with the stress of everything and plastered the entire house with childrens paint and I felt mortified by what I had done, so I struggle now to keep myself free from stress as I can so I don't get like that again, thing is no one understands at all, and that makes me feel even angrier, but I have to try and accept it.

 

Oh no I'm rambling again, I don't know if I'm making sense, can't quite get out what I'm trying to.

[florrie]

The other thing I wanted to add is that I wonder if passiveness is more in girls than boys, but I'm sure there are many exceptions.

 

I remember Tony Atwood saying in his book that the belief that aspergers was mainly a male condition was probably not true, it is just that boys tend to cope with stress and overload by becoming agressive and developing behavioural problems which cause problems to others and therefore get noticed whereas girls would withdraw, mask more and become invisible hence less diagnosis of girls.

 

before I knew I was on the autistic spectrum I used to develop different personas, I was like a chameleon, I, would be whatever I thought the other person wanted me to be, i think it was because communicating was so difficult that just agreeing with others and being what you thought they wanted was easier than having to communicate or relate to them, just masking ,it is a way of getting by with minimum stress. Now that Im aware that is what I had been doing all my life, I try not to do it but the behaviour is so engrained that I still do it although I'm aware of it now. My son also does it but to a lesser degree probably because he went to a school where he felt more comfortable to be himself.

[darky]

hi there, i was so pleased to read this thread as it really does apply to both my son and my daughter, although both are on the asd spectrum i have my daughter who is medicated due to attentional difficulties and i have my son who is extremely passive whilst at school.

my daughter, now medicated is apearing to be fitting in quite well, but i recive huge backlash from her at home. it seems to be the attitude at school now, that as she is compliant she does not have needs, even though loads have been identified from outside agencies and recommendations made, which are not being adhered too.

my son, has always been very quiet at school, he "gets through" the day with a big grin on his face, he does not ever put his hand up to ask for help, he activley avoids drawing attention to himself. he has a "great gift" of blending in. he laughs along with jokes, but further questioning reveals he has not understood the joke, he shows some interest in football, but again question him about it, he has no clue of rules etc, its his way of learning he can fit in socialy. no one has listened to me. i have expressed my concerns to the school about it and was fobbed off. i have sought a full asessment for him and im glad i did. the asessments have shown just how clearly he struggles every day to "fit in" his motor skills have been asessed at just 1% he has clear perception difficulties, hes had speech and language therapy and been shown to be incredibly literal amongst other things. im sure he will get a diagnosis of aspergers syndrome very soon.

im the one who gets the backlash, both my son and my daughter come home from school and let their frustrations be known to me, i get the tantrums, the screaming, the frustration. this happends from the min they leave school until they get to bed. the only time things are not too bad is when they are not at school, weekends and school holidays i get some peace.

i do think they should get help for their needs, and understanding from their teachers, they need support and love from all that are in contact with them.

it seems to me to be that if a child is quiet and compliant, thats all that matters.

my daughter medicated, quiet and compliant most of the time at school is no longer a problem because she no longer shows extremes of behaviour. my son happily grins all day and dont cause any trouble blends into the background and is not a problem because hes "good"

 

i was extremly happy to see this thread, as this is exaclty the issue i want to fight. i cant see any reason why my kids cannot be helped because the fact that they are good. there are children in mainstream schools in the governments inclusion at all costs that have extremes of behaviour and are helped because they cant help but be noticed, because of this the children that are more passive are missed, ignored even. im of the opinion this has to be stopped. all children regardless of their behaviour, extreme or not, if they have needs they have rights, i want to make sure they get them. if theres any way i can help please contact me.

[florrie]

Hi darky, I agree with you, thankfully at least you are aware of the difficulties, I'm still struggling to get proper recognition for my son and my own difficulites and I think most people are here, the concern I have is that if you are a passive person on the autistic spectrum, sooner or later you may have a breakdown with the stress of everything, which is what happened with me, and I was still being passive then, so they didn't even recognise that, mind you |I also have communication difficulties, which contributed to my difficulties not being recognised and it made things even worse, because i was already extremely unwell and unable to cope, and then was blamed for it. Your son does sound similarbut at least he has got a mum who is aware of his difficulties, so hopefully this will prevent what happened to me happening to him.

[darky]

hi florrie, thanks for your reply there. this is what i need in order for me to know i am doing the right thing, instances where the system has failed people. this is what is worrying me, its the long term effects. i know there is so many kids out there that may be struggling and their needs not recognised, that by being passive and introvert its assumed that they are ok. on the sen code of practice it clearly states that parents should be partners with the school, and that the school should listen to the parents regarding concerns, but they dont and this is a potentialy huge problem. i have read stories of parents being accused of making stuff up about their children in order to gain attention, that even to the extremes of being accused of munchausens by proxy. its a terrible thing, it was on the news the other day that a couple went to social services in order to recieve help for their demanding children with aspergers, their children ended up on the "at risk" register!! not forgetting of course poor debbie.

i need to get to the bottom of whether its a funding thing, or whether its a case of teachers not being able to cope with the pressures because of significantly more demanding children being taught in mainstream schools or lack of training or a combination of all three. or maybe something else! once we can get to the bottom of these issues we can begin to try and understand why the more passive groups needs are not recognised and fight it!

[Surrey]

This is my first time on this site and Ive read this thread with much interest. I had the same problems with my son. I suspected my son was autistic, but when he started school he was well behaved and pretended to cope. At home was a different story. No-one at the school wanted to acknowledge his problems. The headteacher thought there was nothing wrong with him and put an immense amount of pressure on the Educational Psychologist whenever she visited my son.

 

In the end I went to my doctor's and got an a referral to the The Newcomen Centre, Guy's Hospital. I had to wait 18 months for the appointment, but as soon as they saw my son he was diagnosed as autistic. It was amazing how the school's attitude changed once I had the report - they were bending over backward to help - he got an ISA before he even got a statement . However it was too late for my son - he could no longer keep up the pretence - I had to take him out of the school and he now attends a special unit. His confidence and self esteem took a severe battering and it has taken two years for him to begin to believe in himself again.

 

If you are having problems with the school, my advice is to follow you instinct and go the top straight away.

[juliebusfreak]

My ds stayed as invisible as possible in the school. He learnt how to fudge enquiries and requests and appear compliant whilst actually not giving anything. The staff didn't see him because he didn't want to be seen. But the moment he got out of the school door he went nuts. Meltdowns twice a day, miserable, unco-operative, obsessive to the nth degree, didn't want to know anyone or anything for at least two hours after school, then had nightmares all night. School didn;t want to know. No statement, no help, nothing. I eventually decided to HE, and its the best thing I ever did. He hasn't had a full meltdown since the day I de-regged him, and his confidence grows every day.

[fly62]

I have a son who is diagnosed with aspergers syndrome ( He is now attending a special school - but what a fight) He always tried to fit in and would take his frustration out on us at home.

My daughter who is 9 is now showing much less severe problems (The peads are doing a 3di?? assesment at the moment as he agrees with us), however i am banging my head against a wall with her school who do not see a problem at all. - Hence no problems will show up on their questionaire don't know where to go from here.

[simplydeb]

We seem to be the other way around. Our son who is nearly 5 shows no traits at all at home or with us as a family but the school are saying quite the opposite. we feel there is nothing wrong and feel that aspergers is being pushed onto him, he also never has a problem apart from a bit of initial shyness when he goes anywhere with us. Anyone else got this problem just in the school environment? Thanks Debie

[nellie]

Hi Debiie,

 

If you look at the following you will see that the reverse scenario is true.

 

 

Taken from: Meeting the Needs of Children with Autistic Spectrum Disorders

By Rita Jordan and Glenys Jones

 

When life at school and home is going well for the pupil, and parents and staff are receiving positive reports from each other, it is likely that parent-staff relationships will be easy to develop and maintain. However, both staff and parents need to prepare for times when the child's behaviour or performance might be viewed as a problem either at home or at school. Staff-parent relationships might then be more difficult. It is possible, for example, for each to blame the other for something they are doing or not doing with the pupil. It is important in these instances to gather information on the nature of the problem and on the factors which might be contributing to this at home and school. It can be easy to take the quick route and guess what the cause might be, without making adequate enquiries and getting clear, factual information from all involved. Engaging in speculation is not helpful and is likely to lead to the apportioning of blame and ineffective solutions. This is particularly true when the child's behaviour appears to be very different at home from his or her behaviour at school. Pupils may pose no major behaviour problems to staff and be very undemanding and well behaved in school. When they arrive home, however, they may engage in challenging behaviour towards their brothers, sisters or their parents. It seems as if the pupil manages to contain all the anxieties and difficulties experienced at school and releases these on returning home.

For some children, the reverse scenario is true, particularly when the child first starts attending school. The child may be relatively easy to manage at home, perhaps because the environment is faily constant and familiar and there are few demands to be sociable or to engage in tasks which are not interesting to them. In school, they find themselves in what is to them a noisy, confusing, social environment where people attempt to communicate with them in ways which they often do not understand. In additon, they are encouraged to engage in tasks which may hold little interest or meaning for them. Their reaction is to try to sabotage the activity or to escape or to do nothing, all of which challenge the teaching staff. When parents and staff hear very different accounts about the same child, they may find it hard to believe or they can be quick to blame the other. It is important to acknowledge that very diffferent behaviour at home and school is a phenomenon found in some children with ASD (as it can be in others).