"We are all on the spectrum"

[madme]

DD9 has a diagnosis of Aspergers and SID. She has been having a few issues at school in the playground. She has friends but finds some aspects hard- letting them play what they want , when they don't want to play etc. She has a very direct personality. She upset a child by saying something that she shouldnt have but it wasnt malicious merely stating what she saw as the truth. She got into a lot of trouble and got a sanction slip for this. I accept that and supported the teacher at the time. She has to acquire the skills as otherwise she won't be able to function in society. However I did feel that the teacher once again failed to see what was happening. I spoke to the deputy head = and discussed both issues and she responded that she would talk to all the girls and see what was going on as most 9 year old girls are like this. She then went onto say that we are all on the autistic spectrum. We had a meeting not long ago with the head and senco who agreed that all staff would be getting asd training as another child in my daughter's class had just been diagnosed. I just feel they just don't get it. Things don't really seem to have moved on since my son was in primary. If she was in a wheelchair she wouldnt feel able to make such patronising comments.

[cmuir]

Hi

 

That type of belittling and ignorant comment infuriates me. Absolutely true that we all have our little ways or idiosyncrasies, but there's a cut off point when a bigger picture can be seen (obsessive behaviour, dislike of changes in routine, eye contact, etc).

 

My son has been in a mainstream school since nursery - he's now in P4. I've yet to be convinced that mainstream is the best place for ASD kids. We're always hearing about inclusion, but it's not backed up by the funding and knowledge/training/expertise/etc. ASD kids are expected to fit in with little or no adjustments or allowances being made for them. There's also no specific social skills being taught.

 

Best wishes.

 

Caroline.

[Sally44]

I have professionals say this all the time. On the one hand, I take their point - we all have days when we cope better than others. But the people having these 'off days' are basically NT with all the language and social skills to know what to do and how to cope with what life throws at them (within reason). It might be worth a comment one days like "if my child was in a wheelchair would you say that we all spend time sitting in a chair!"

Regarding your incident about your child saying something that upset another child. If you suspect that that was down to her diagnosis then I would not accept a sanction strip. I would send in a letter to school asking them to get outside professional advice from a Speech and Language Therapist that has experience of working with children with ASDs for her to come and assess her social language and interaction skills and put together a programme that is on her daily timetable whereby she can learn these skills. I find their behaviour on a par with giving out a sanction slip to a child with tourettes that kept shouting out in class. Every child should have the opportunity to 'learn' how to behave appropriately. But if a programme and supports are not in place then you cannot reprimand a child for something they have a difficulty with.

For example my son has some serious sensory issues and in his last school he had two occasions when he threw things and nearly hit someone. Again school did not recognise the problem, and we were on a 24 month waiting list for an OT. As part of my letter for a Statutory Assessment I said that I could see my sons behaviour deteriorating and that nothing was being done and that I would not accept any punishment or exclusion given to my son if something where to happen when everyone involved had done absolutely nothing to assess, support or teach him.

[szxmum]

I think comments like this depend on who says it, what the context is and how you are feeling at the time.

 

I have also had this said to me by the wonderful Nurture Group teacher who kept me going this last year through ds's GCSEs and attempt at sixth form. I can remember thinking at the time "OMG, he doesn't think ds has AS. What the h*ll do I do now? What the h*ll is the matter with ds?" Looking back, I think all he was trying to do was to be reassuring.

 

Another comment that was made to me at a later date by a different Nurture Group teacher was that ds was "the most Asperger's young person she had ever met". I can remember thinking at the time "What the h*ll is that supposed to mean? Is this supposed to make me feel better?". Again looking back this was at the time of ds's diagnosis and I know at the time there was a lot of behind-the-scenes meetings to discuss ds. I am just guessing here (because I'll never really know) but I think there will have been discussions with the Ed Psych about ds's Autism Assessment. I found out last week that ds's ADOS scores were that high they were nearly off the scale. This puts a different slant on the Nurture Group teacher's comments. I just picture the discussions "OMG, how did we miss this one!!"

 

However, this is all surmise on my part. What matters is that we know now and are beginning to move forward.

 

 

 

It might be worth a comment one days like "if my child was in a wheelchair would you say that we all spend time sitting in a chair!"

 

Wow Sally, you don't take any prisoners . Personally, I was thinking of a reply along the lines of "It's great that Autistic Spectrum traits are more widely recognised within the general population but don't forget that a high concentration of these traits can severely impact on an individual's ability to function in society". But then I always was a bit of a wuss (sp?) - okay a bit wet

Edited June 23, 2009 by szxmum

[madme]

Thanks for the comments. I have to say that I am wary of the way to deal with this, Nothing has happened at school today and perhaps it is better to see how they react.

[baddad]

I can understand it being a bit annoying, but reading what you've posted it sounds more like she was just saying 'this is fairly natural behaviour for a nine year old'... If it was fairly natural behaviour for a nine year old and it was inappropriate behaviour then excusing it because of autism (which if it was a fairly natural nine year old's behaviour hasn't got anything to do with it) is equally inappropriate. Taking Sally 44's comment about wheelchairs, it only applies if the comment was made about wheelchair specific behaviour (? )... If the behaviour being enacted by the wheelchair user was inappropriate, but no different to the behaviour of an inappropriately behaved non-wheelchair user (i.e. was to do with aggression or verbal abuse/rudeness) then the wheelchair is completely irrelevent, and to bring it up would just be passive-aggressive 'gainsaying' to guilt-trip the other party into submission.

Hope that makes sense... putting it another way, if a wheelchair user was using his/her wheelchair to run over other kids in aggressive/unprovoked assaults that's not a behaviour that has anything to do with his/her status as a wheelchair user... the teacher saying 'well we're all capable of being aggressive' isn't a patronising comment about wheelchair users, it's an observational comment about the universal potential for aggressive behaviour.

 

L&P

 

BD

[Sally44]

I think comments like this depend on who says it, what the context is and how you are feeling at the time.

 

I have also had this said to me by the wonderful Nurture Group teacher who kept me going this last year through ds's GCSEs and attempt at sixth form. I can remember thinking at the time "OMG, he doesn't think ds has AS. What the h*ll do I do now? What the h*ll is the matter with ds?" Looking back, I think all he was trying to do was to be reassuring.

 

Another comment that was made to me at a later date by a different Nurture Group teacher was that ds was "the most Asperger's young person she had ever met". I can remember thinking at the time "What the h*ll is that supposed to mean? Is this supposed to make me feel better?". Again looking back this was at the time of ds's diagnosis and I know at the time there was a lot of behind-the-scenes meetings to discuss ds. I am just guessing here (because I'll never really know) but I think there will have been discussions with the Ed Psych about ds's Autism Assessment. I found out last week that ds's ADOS scores were that high they were nearly off the scale. This puts a different slant on the Nurture Group teacher's comments. I just picture the discussions "OMG, how did we miss this one!!"

 

However, this is all surmise on my part. What matters is that we know now and are beginning to move forward.

 

 

 

TBH, as your reply says, it depends on what day you catch me. But because ASDs are 'invisible' disabilities they can sometimes be brushed aside as insignificant, when in reality no-one, unless they have an ASD, actually knows what it is like to go through what they experience. I can be cuddly as a teddy bear sometimes.

But it is still quite close to our tribunal date and finalised statement (Feb this year), so I've still probably got alot of steam to let off!

 

Wow Sally, you don't take any prisoners . Personally, I was thinking of a reply along the lines of "It's great that Autistic Spectrum traits are more widely recognised within the general population but don't forget that a high concentration of these traits can severely impact on an individual's ability to function in society". But then I always was a bit of a wuss (sp?) - okay a bit wet

 

[call me jaded]

The one-day ASD awareness training does highlight that everyone displays so-called ASD traits.

 

What they mean is that everyone displays human traits. The reactions to stress, etc described throughout this forum are perfectly normal human traits, what is unusual is what the triggers are. Someone with ASD may find going to the supermarket incredibly difficult - the responses are stress ones that everyone displays under different circumstances.

 

Today, the doctor is definitely IN.

[szxmum]

What they mean is that everyone displays human traits. The reactions to stress, etc described throughout this forum are perfectly normal human traits, what is unusual is what the triggers are. Someone with ASD may find going to the supermarket incredibly difficult - the responses are stress ones that everyone displays under different circumstances.

 

I have learnt so much about AS over the past year and especially over the last couple of months and your post Jaded is exactly the point where I find myself at now.

 

What interests me is the intensity of the stress reaction experienced by someone with AS. I agree, a stress response is a normal human trait but...... the stress responses (triggered by autism) exhibited by my ds are extreme (abnormal). He experiences this extreme stress response on a daily basis in reponse to trying to live a "normal" life eg going to a supermarket, going on a bus, going into the bank, leaving the house. This extreme stress response has resulted in mental health problems - anxiety, depression, phobias, OCD. This extreme stress response has disabled him - he cannot function "normally" in society.

 

So what is the answer - the only thing that makes sense to me is the SPELL approach from the NAS (S - structure; P - positive reinforcement; E - empathy; L - Low arousal NOT no arousal; L - links). Ds is going to have to learn that he responds severely to stress and will have to learn to manage his environment to keep his stress levels optimum for him.

 

I do have a passionate interest in this area because I now firmly believe that Autism runs in our family and I'm not indiscriminitely self-diagnosing here, honestly. I believe my father and my brother would receive an ASD diagnosis. My father, unfortunately, is dead now but he was an alcoholic and I believe he self-medicated to numb his anxiety. My brother suffers severe generalised anxiety and has extreme panic attacks - he also self-medicates on alcohol and any prescription drug he can get his hands on. (BTW when I told my brother about ds's diagnosis, he told his psychiatrist who told him that AS was a childhood condition that you grew out of )

 

So as you can see, I am extremely keen that my own ds learns early to manage his own anxiety and extreme stress reactions in a healthy way that does not involve trying to numb the feelings through drugs or alcohol.

 

Anyway, sorry to the OP for highjacking your thread but Jaded's post sent me off on one of my "there has to be a way to deal with this moments"

Edited June 24, 2009 by szxmum

[Sally44]

I think you can teach the individual child alot just by talking through with them what may have triggered it and how they feel. My own son does not have such severe responses as you describe, but I know it was a real eye opener to him when we talked about him experiencing things differently. He thought everyone was the same and that he was just bad or stupid or a loser. By telling him that he sometimes sees, hears, feels, smells etc things differently has helped him not to be so judgemental on himself. And he uses things like Irlen lenses and ear defenders when necessary. But again I may need to talk to him about 'what might happen' and 'do you think you might need your glasses and ear defenders'.

 

I think we can get over sensitive as parents because we usually spend so many years with people telling us there is nothing wrong. And then LEAs telling us our children don't need more support, or can remain mainstream etc. That when another professional says something like that you just think 'here we go again'. Professionals can forget that they are talking about individuals and families that have been through very tough times. I remember my son's former headmistress talking to me (pre-diagnosis) about how my son might need a Special School. She obviously had the years of experience to know that basically his current school was not going to work but she totally lacked sensitivity or tact. It had only just been confirmed by school that there was something 'definate' that needed investigating by asking the SALT to observe. I had no idea that it might lead to something like that. I felt like I had been punched in the stomach and just went home and sobbed. And then continued sobbing on and off for the next 2 years until things finally got to the stage where he is statemented and in the right school.

 

But I do still feel that the main 'aim' of many strategies is to 'wean him off supports' he uses which are working. I don't see the point in that. An ASD is for life. The anxiety that comes with it is for life. If there is anything that helps reduce and control that then why remove it? At the moment they seem obsessed with getting rid of the ear defenders and the only reason I can see for this is because they make him look different. Because everyone agrees that they do help him by reducing the stimulation so that he can focus better and for longer. So why take them away?

 

Although I agree we all have human traits. Those specific to ASD, or SID or CAPD are not necessarily ever experienced by someone who is NT. I do have some sensory issues and also have CAPD. I cannot believe anyone would understand me unless they knew what I was feeling or experiencing. For example I find it hard to talk on the phone if there is any other background noise. I simply cannot tune into what the person is saying. Someone might say 'oh I find it hard to listen in noisy places too'. But it isn't the same. It isn't 'hard' to hear. My ears seem to have a mind and filter of their own and pick up only what they want from any sound source. The frustration that causes when you need to speak on the phone and you cannot I cannot describe. Even as I'm typing it in I can feel my stomach going into knots just thinking about it.

[szxmum]

But I do still feel that the main 'aim' of many strategies is to 'wean him off supports' he uses which are working. I don't see the point in that. An ASD is for life. The anxiety that comes with it is for life. If there is anything that helps reduce and control that then why remove it? At the moment they seem obsessed with getting rid of the ear defenders and the only reason I can see for this is because they make him look different. Because everyone agrees that they do help him by reducing the stimulation so that he can focus better and for longer. So why take them away?

 

I'm with you on this one - after experiencing the impact of sustained, high anxiety I would go along the lines of if it works, why take it away for the sake of appearances. However, you may find that as a teenager, the need to be the same as the pack will mean that he will stop using them of his own volition (at least in public or where he may be seen by his peers).

 

It is interesting though, as you know my son was not diagnosed till 17 and he has developed his own coping strategies. He will cover his ears or eyes with his hands or he will pull his hoody over his head - to all intents and purposes, he has supplied his own defenders.

 

Capd??? sorry, don't know that one yet.

 

Szxmum xxx

 

[smiley1590]

i believe NT'S have some small aspects of ASD's but in some people becomes stronger and then goes on into full blown ASD where affects their daily lives to massive extent and families suffering too! i believe different triggers together set it off to make this happen and become possible of having a type of ASD!

[Sally44]

I'm with you on this one - after experiencing the impact of sustained, high anxiety I would go along the lines of if it works, why take it away for the sake of appearances. However, you may find that as a teenager, the need to be the same as the pack will mean that he will stop using them of his own volition (at least in public or where he may be seen by his peers).

 

It is interesting though, as you know my son was not diagnosed till 17 and he has developed his own coping strategies. He will cover his ears or eyes with his hands or he will pull his hoody over his head - to all intents and purposes, he has supplied his own defenders.

 

Capd??? sorry, don't know that one yet.

 

Szxmum xxx

 

Central Auditory Processing Disorder. Sometimes it is just called Auditory Processing Disorder. There are different aspects of it, but I believe alot of those on the spectrum have it or aspects of it as it is sensory processing related.