Aspergers being mentioned again. Just want to talk.

[LynetteScavo]

After a long meeting with the school today about ds1 (12), Apspergers has yet again been mentioned. School kept asking me if a diagnosis would help DS, and help him understand why he cant make friends/only has one friend. Seems a weird reason for a full blown DX. Surely the school should just realise what type of person he is and deal with it.

He won't be able to walk around adult life wearing a t-shirt with a diagnosis on.

3 ed psych's have ruled Aspergers out (only one actually tested) and I don't think he will ever have a diagnosis, which is fair enough.

On paper he ticks every box for aspergers, but I thought he was coping in every day life. Apparently not at school.

Ds is happy with no friends. Just because he doesn't look happy doesn't mean he isn't.

Does he need friends?

Should I just try and teach him how to make friends, even if he doesn't want any? His social skills are really good now. He says hello and goodbye without being prompted, and nods in all the right places.

Could he just be on the spectrum without being diagnosed? When things were explained to me I was told it varies hugely. I have one ds severe and one with 'traits'.

I always think with the friends thing some people don't have lots of friends if any. My ds' lack of friends bothers me more than him. He found it easier when he joined in with clubs like warhammer which seem to attract aspie type boys that bore each other to death and make very little eye contact {I apologise in advance if I offend any very sociable warhammer types}:}

"Could he just be on the spectrum without being diagnosed?"

I guess that is my question.

Well I think yes then. Sorry if I am being a bit thick am very tired. If I can offer any advice I will. Have one with diagnosis, statement etc and one without. Younger one has more traits though rather than severe.

Hi LynetteScavo ...
Does a DX help? I think so. (Speaking as one whose DS was in the system for 8 years before final dx at 14.)

Schools like it because then they have a handy pigeon hole to put him in, and it does allow them to plug into some useful support systems for him. And secondary schools are big places - sure the staff should be able to deal with his needs, but he will have constantly changing staff members dealing with him, who need a quick easy-to-understand label to clue them in that your ds may need help in particular ways that will already be familiar to them with that label. That does help both him and you because while he's happy now, there may be times ahead when he has problems and it is easier to say simply, 'He has Aspergers' than to say, 'Well, he has Asperger traits but he's not diagnosed ...' There will always be some who think that means you've made it all up!

And also, we see them at home in their safe environment and my ds is so borderline that I tried to kid myself off and on for years that there was no real issue - but school is a whole different deal and they can really struggle there at times. It proved much easier to insist on certain things once I could wave my bit of paper and say, 'He has Aspergers.'
So for me it was right to go for a proper DX (not just an Ed Psych, fab though they often are) and what you do with that info is then up to you. How you explain it to your DS is an entirely different matter! It is the issues rather than a label that matters there and it's a long process of explanation, not a one-off conversation, as I'm sure you know.
Have you been on the NAS website? They're very good.
Hope this helps ...

Lynette, what problems is he having at the moment, from the school's point of view?

WillowInGloves, thank you so much for that post. It's helping me see through the smog I seem to be in atm.

At school I'm told he is much better able to control his anger now (I had no idea he couldn't control it in Y7, although I had been aware of this problem for the past 3 years.)

He is being generally disruptive in lessons. He will start the lesson well, focused, putting up his had to answer questions, but it goes down hill, he starts to rock back on his chair, puts his head down on the desk...today someone called him four eyes, to which he responded by shouting out " racist bastard", at which point he was sent out of the room.

Staff have noticed he doesn't understand the subtleties of others body language or voice. He wants to spend time working quietly in the exclusion room, and is happy to have lunchtime and after school detentions, I think because he feels safe there. He finds the classroom environment generally difficult, and I imagine so do the teachers and other pupils when he is there. We have agreed I will now give him consequences at home for poor behavior at school.

The school are worried he is having trouble forming friendships. DS tells me this is because he only likes one person.

Teacher perspective here. A diagnosis can be useful for the teacher as well as the school and the child.

for the child, knowing they process information differenty tells them why everyone else is wrong so often.

For the school there is funding.

For the teacher there is flexibility. I had a class with a student with an aspergers diagnosis. Because he had the diagnosis I could give him the worksheet at the start of the lesson (IT key skills), he would work on his own, finish and then play computer games for the last 20mins of class.

The rest of the class I was teaching in a more typical way. Going through the work, asking questions, giving individual help.

Because the student had a label I was accomodating his needs - short attention span with a reward for finishing. Had he not had a diagnosis I could have been in trouble for this approach.

Lynette, I'd say another diagnostic visit - to a proper specialist team - might be very useful. Sounds very much like sensory issues in the classroom that are wearing him out. It happens to me when I go into classrooms as well - can't do a whole day in there for the life of me, even as an adult. So how some younger people cope is beyond me.

"he doesn't understand the subtleties", is classic-de-la-classic, isn't it ?
My son often doesn't even notice that he doesn't have any friends. Never ever asks for anyone to come round and play. And yet at other times has sobbed and sobbed and said he wanted to die because he was so lonely.
You said he was happy. Doesn't sound happy to me.

Thanks for the replies.

amberlight, you said; "Sounds very much like sensory issues in the classroom that are wearing him out" How did you know this? That is exactly what I think is happening. I am now actually crying because someone understands.

I emailed the school last night, saying I think a diagnosis would be helpful. What do I need to do next?

What I actually think is going on here is severe sensory processing issues (everything is too loud too bright too fast too tight) combined with anxiety (or maybe anxiety because of this?) combined with mild Aspergers = a little shit in the classroom.

I want to tell the school we all need to stop, remove everything that is causing the anxiety, and start again. Then we will have a boy who can last a whole lesson without disrupting others. Obviously this isn't possible, though.

So what do I do next?

I guessed because I'm on the autism spectrum and my response to classrooms is to get more and more overwhelmed by the sensory stuff until my brain hurts so much that I could cry.

Enter playground - deafening noise, huge sensory input from social signalling and groups.
Go into class - clattering desks and chairs, humming computers and projectors, everywhere you look there's visual stimuli, people chatter away in groupwork, teachers calling out over the top. The smell of each person, the feel of the school clothing and shoes (usually tight/rough compared to casuals)...and in the middle of it the teacher wants us to learn something?! Might as well put someone in the middle of a rock concert at max volume 18 hrs a day and ask them how much they can learn about Shakespeare during it. We'd do anything to get away from the nightmare of it all. That's the trouble with a brain that can't switch any of its senses off (which is generally true for many of us).

So yes, I think a proper assessment is going to be a way forwards. If school aren't useful, go to GP. Contact IPSEA charity as well - they are nifty for advice. Easy to google them.

OP...I am in a similar position to you. DD is borderline for so many things and I have always been a kind of "she is who she is" type of person.
Now in YR4 it is apparent that she is significantly behind her peers, with only one friend and is struggling with school work. I feel that she has an auditory processing issue.
For me a DX will help her tremendously at school (more funding) and at home (more support)
Also, as others have said, sometimes it would be useful in some situations to be be able to say "she is behaving like this because she is XXXX"
I wish you well with whatever course you decide to take.

ds1 is similar in a classroom situation but reacts by withdrawing completely and zoning out. he also does it during conversation etc. he's y5 now and we've had six years of 'poss as/asd/add/adhd/odd/ um, we don't know but he's v different'. he also has some sensory difficulties with food etc, and some continence issues. he has some friends, but tbh they just hang out and play ds games. he struggles with group play if he can't dictate rules etc.

if it helps, the new paed has finally suggested a comprehensive psych-ed assessment and it's booked for next month. so i'm slightly apprehensive that after 6 years of schooling, we'll be able to say 'he has x' rather than 'weeeeeeeell we know he's different, but the jury is out on which box he fits into'. or that's the theory anyway. if it comes back inconclusive i may well weep.

we have been considering homeschooling as he is unable to function in a classroom environment to his full potential, and he's as bright as a button when he's 'on'. it's definitely round peg, square hole with school.

dave - i think it becomes more noticeable around y4/5/6 tbh. the peer group and the environment changes, and issues which have been manageable further down the school can be more difficult to mask.

Hi Lynette, i have a dd with a dx of Aspergers, she's now 7, the dx has not helped her a huge deal at school but it has helped her understand why she is like she is, she knows she see's things differently and struggles with friendship because she has Aspergers.

I also have a dss who has not got a dx, he's now 18 and can see that he is similar to dd1, he wasn't referred to a paed until he was 12/13 and then he refussed to go (so could not get a dx).

I would push for a dx if i was in your shoes just so he can have a answer to 'why he is different'.

i was thinking about this in terms of 'passing' the other day. (i have no idea what you think about this, amber, and it's really not scientific at all!)
when they are little, a lot of quirks are ignored because they could be chalked up to immaturity or whatever, but in late primary or early secondary, that rationale becomes more difficult, and it gets to the point where some sort of dx is a natural progression, whether in terms of seeking support/ differentiation to the environment, or in terms of helping the child or young person themselves understand what makes them unique. so it does get more difficult to 'pass' as nt as you move further through school.

ther have been quite a few 'borderline-ish kids' posts where they are all around the same age, and at this point in the term, new teachers will be using parent's evenings to suggest formalising the quirks to support the dc's better.

(i should add that ds1's teacher cried at our parent's evening.)

I used to think DS had some AS traits, but probably mild, not enough to get a diagnosis (he is 7 and in Yr 3). He was diagnosed with AS recently, and it is clear from the paed report that he isn't even borderline, he is well over the line for AS, now I know that, the more I see how true it is. Everything I read about AS fits him to a tee. Although I was very upset at the time of the diagnosis I am glad we have it as it makes me much more accepting of him and I know it will be helpful for accessing more help (school have really ramped up his help this term).

There are two usual routes to diagnosis, which is by a paediatrician, one is a referral from the school nurse office, the other is via your GP. We asked which would be faster and it turned out that in our area both referrals go via the same meeting before being approved, so we went via school nurse. However it was 4 months after we first requested the referral that we actually saw the paed, she then assessed him over a 6 month period, so it took nearly a year in all. Things may be different in your area, maybe ask your SENCO what is normal, if that proves unproductive go to your GP. Go armed with the reasons that you feel the referral is needed. Good luck!

amberlight - I've googled IPSEA. Thank you - I wish I'd has access to that information a long time ago!

And thank you every one else, too.

"I want to tell the school we all need to stop, remove everything that is causing the anxiety, and start again. Then we will have a boy who can last a whole lesson without disrupting others. Obviously this isn't possible, though."

Well, maybe not completely, but possible indeed.

A dx will allow support to be given- I have taught children with ASD in mainstream secondary; one boy in particular behaved exactly as you describe your son in the classroom. We worked with him by breaking the lesson into chunks- 15 minutes of work and then a 5 minute break was enough to keep him focused. This was then faded back until he could cope in lessons.

He also had his own discreet reward chart which earned him points for very specific behaviours. He chose the rewards.

There are strategies which could work for him, and it sounds as if the school are pretty clued up and supportive so I would expect them to be proactive in devising strategies for him.

The other thing is that a dx may be useful to him in subsequent teenage years when he is aware enough to know that he is different, but not able to read social cues enough to assimilate to his peers.

The boy I mentioned above was diagnosed at 13. He found this diagnosis a huge relief, as it meant that it was not his fault and he was not 'stupid', as he had always thought

It also allowed him to access support services outside of school such as social groups which he enjoyed immensely and made some friends. A dx allowed him to access these services once he'd left school as well- he won't be at school forever.

Good luck with everything

Yes, I think the idea of 'being able to pretend we're normal' is exactly right. Or seeming to be somwhere near normal. (Er, whatever normal is...). Girls in particular can be spectacularly good at mimicking socially acceptable behaviour and just hiding the intense pain and stress for year after year...until we have a breakdown from it. Same with quieter boys. It tends to be only the most disruptive of lads who get diagnosed as a result. For years, autism was seen as a behavioural checklist, not a brain development difference, so 'bad behaviours' were all that mattered. If someone was behaving wildly, they had 'severe' autism, whereas those of us who learned to sit really really still were thought to have 'mild' autism. Er, no.

I've had a email from the school suggesting I ask our GP for a referral to CAHMS. The last time we went to CAHMS we were offered anger management (which did help), and the last time I asked the GP for another referral to CAHMS because of DSs behavior in school the GP said if his behavior at home was manageable, then the problem was the school, and they needed to deal with it.

If we've seen CAHMS already (was 4 years ago) can I go directly back to them, or do I need to go through the GP again?

phone up camhs and ask if the referral is still open.

Thanks, tocha, I will do first thing on Monday morning.