Ds, 4, is going to be assessed for autism, can someone reassure me his life is not going to be impossibly difficult if a diagnosis is made?

[bunny2]

I have just had a meeting with ds' teacher. She has had concerns for a while (I hav had a few mysefl) and wants ds to be assessed by the Ed Psych. I feel really upset by it and want to hide away, with ds, from the world and protect him from it. Please, please can someone reassure me, if he is autistic can he lead a normal and happy life?

thanks jimjams and davros. Concerning the sensitive hearing issue, ds has now completely 'outgrown' this particular difficulty - it was a problem from approximately ages 1 to 8/9 years. Funny thing was that age age 8 ds came home from school one day and was able to tell me in his usual hesitant style 'I heard some music today. I think it was somebody called MMMMM....don't know' Me: 'Could it have been Mozart?' Ds: 'Yes, Yes that was it.' Next day I rushed out to buy Mozart cds for him which he listened to every night for about a year. I have since discovered from the internet there is such a thing as 'Mozart therapy' specifically for adressing over sensitive hearing in autistic children!!! Has anyone else come across this therapy?
As for AIT - can you tell me a bit about it?

As for university - well you've really got me thinking now!! You see all the time he has been at school I feel he has been making huge progress and in a way I have been able to 'switch off' from his problems. However once he leaves school I feel we are on our own again to find the best way forward - and it is dead scary! He has dual Australian/British nationality and has been very keen on the idea of going to uni in austrlia, near my sister, cousins etc. This is unthinkable as far as I'm concerned!! I have told him that I think 12,000 miles away is too far away to be at age 19 - I've not mentioned the idea that he may need 'extra' help!! And I wonder what form of 'extra' help might be approriate?? I have got a huge amount of work ahead of me I can see. And, as you say Davros, what about back up plans???? Thanks girls - got some serious thinking to do about this.

Forgot to say - Flappers Arms - LOL!!!!
Actually ds wasn't an arm flapper. Pub name - think about my nickname but it is very unusual for a pub name so I may not respond if you get too close!! At the moment I'm enjoying being anonymous. Oh dear hope that doesn't make me creepy!!

Bunny2, can't add much to this fascinating set of responses, but just wanted to reassure you that it isn't the end of the world and it's not - really it's not - going to stigmatise him at his tender age.

what fantastic responses - thanks again! There is such good advice here - binkie, if the ep's opinion si that ds does display some ASD characteristics, what will the next step be and how long does this whole process take? IS it worth doing things privately (ds is covered on my parents policy)?

I dont think ds shows any more than mild ASD characteristics - while I understand he mightnt be "cured", can I expect his symptoms to worsen or are they likely to stay mild?

Having read till late in the night I can see some ASD tendencies in almost everyone I know. Certainly all the 4 year old boys I know exhibit at least some of them. How is a dx made? Is it the amount of characteristics displayed? Or the severity of them?

redsky, super jealous about the pub - it is my dream vocation!! You should organise a SN night for us all, I could do with a drink!

Ooooh Bunny please swap places with me - running a pub is the LEAST suitable job for me that I can imagine!!! AND Dh is not much happier than me. But hay ho it's a living! Ds definitely has problems with 'home life' - hence boarding! Bit of a mess for us all really!! Dd 12 is the only happy one here!

Bunny2, if your DS is covered for private health care then DO DO DO make a private appt too. If you do have to take things further you will have to access NHS services but getting started faster and with someone you have chosen is definitely worth it and can make the other professionals take things more seriously.

thanks davros - I'll speak ti my dad about it tomorrow.

redsky - I couldnt run a pub, I'd drink all the stock.

bunny2, if the EP does say that there look to be some ASD characteristics, and you have the option of seeing someone privately, then I think you should come back here for next steps guidance, perhaps a personal recommendation. I would have thought a relevantly experienced developmental paediatrician would be where to go next - but presumably you've also seen the NAS website? They have a helpline I think, and that should be able to give you a better picture on exactly who can give a reliable diagnosis.

Do you have a choice as to who you see as EP?

I wont know much until we have had a meeting at the school next Wednesay but I might well take you up on your recommendation Socci.

Thanks again

testing for asperger's

hi everyone. apologies if someone has already answered a questionlike this. I have been reading through as much as I could and feel better for knowing that I am not as alone as I first thought.

I have reached a point with ds1 aged 6.5 whereby after over a year now of being on a psp at school I finally - with the help of CAMHS and what I didn't know existed after 2 years of meeting with the hd - the parent partnership rep from the council - have moved away from solely concentrating with behavioural problems to looking at educational achievements and received an IEP last week which included lsa help. this was such a relief.

afterwards though my CAMH parenting supporter told me that since our last meeting they think my ds1 may have mild asperger's and I am now waiting for an appointment to check this out.

part of me wants to know that he is because it would explain a lot. part of me is scared and unsure of exactly what is done to test for asperger's and so far despite everything what I've really been trying hard to avoid is ds1 feeling that either he is a problem or he has a problem and have shielded him from some of the terrible anxious times and problems I've encountered with other parents in the playground and when we've been out. in my heart though I beleive ds1 is very intellegent. he struggles to make friendships with his peers preferring 1-1 adult intervention and full on attention. and I think he is beginning to notice - especially since ds2 is getting lots of party invites and friends comming round/going out/about he is actually different. this is sad because he does have some wonderful qualities and like I say is I beleive very intelegent in other ways.

so if anyone knows about aspergers testing it may help rest my anxious and forever worrying state of mind - especially after 4 days of hell in the holidays

thanks

does anyone have any knowledge of how asperger's is tested for and how a child reacts to being 'labelled' ? I know the appointment will be just for the two of us and am still waiting for a date but keep remembering our first family visit when we were asked to describe our 'problems' and anxieties and I said that I wasn't willing to speak in front of our ds1 then 5 and ds2 then 3.

testing for asperger's

hi everyone. apologies if someone has already answered a questionlike this. I have been reading through as much as I could and feel better for knowing that I am not as alone as I first thought.

I have reached a point with ds1 aged 6.5 whereby after over a year now of being on a psp at school I finally - with the help of CAMHS and what I didn't know existed after 2 years of meeting with the hd - the parent partnership rep from the council - have moved away from solely concentrating with behavioural problems to looking at educational achievements and received an IEP last week which included lsa help. this was such a relief.

afterwards though my CAMH parenting supporter told me that since our last meeting they think my ds1 may have mild asperger's and I am now waiting for an appointment to check this out.

part of me wants to know that he is because it would explain a lot. part of me is scared and unsure of exactly what is done to test for asperger's and so far despite everything what I've really been trying hard to avoid is ds1 feeling that either he is a problem or he has a problem and have shielded him from some of the terrible anxious times and problems I've encountered with other parents in the playground and when we've been out. in my heart though I beleive ds1 is very intellegent. he struggles to make friendships with his peers preferring 1-1 adult intervention and full on attention. and I think he is beginning to notice - especially since ds2 is getting lots of party invites and friends comming round/going out/about he is actually different. this is sad because he does have some wonderful qualities and like I say is I beleive very intelegent in other ways.

so if anyone knows about aspergers testing it may help rest my anxious and forever worrying state of mind - especially after 4 days of hell in the holidays

thanks

does anyone have any knowledge of how asperger's is tested for and how a child reacts to being 'labelled' ? I know the appointment will be just for the two of us and am still waiting for a date but keep remembering our first family visit when we were asked to describe our 'problems' and anxieties and I said that I wasn't willing to speak in front of our ds1 then 5 and ds2 then 3.

Hi Hawkeye.

Testing for AS seems to vary from place to place but it generally involves you answering lots of questions about your child (early history, development, behaviour etc) and your child being observed while he plays with toys, does puzzles etc. It's usually kept pretty informal. It's a good idea to make lots of notes in advance about the things you consider to be important, eg difficulties making friends, preferring to be with adults etc.

My eldest is still too young to understand about AS/ASD but from what I've read/heard a lot of people with AS describe themselves as feeling relieved to finally find out why they've always felt so different. I know that my dh was very relieved to hear he had AS and said that it explained a lot.

wow. that was a quick response. thanx.

Hawkeye, ds (6) is in the process of being assessed for AS. He's been given a provisional dx based on the information we provided to the psychiatrist, supporting letter from HV (including comments from school), and visits to home and school. She gave a provisional dx of AS and said she was '99% certain' of it. J had the ADOS test last week, which will determine exactly where on the spectrum he sits. As CT says the test is based on play, storytelling, dolls etc and is very relaxed. J didn't even know he was being tested, we just told him that another doctor wanted to get to know him so that he could decide how best to help him with his behaviour.

Aagree with CT about making notes. Even if they don't seem relevant to you, write them down and pass them on - the assessment process can pick up on things you'd never have imagined. I also included a couple of written accounts of particularly bad days/incidents so that they could see what we were dealing with on a regular basis.

Good luck.

Hawkeye-My DS (aged 6) is having his assessment for Aspergers today! We have been seeing the clinical psychologist since January after DS suffered severe anxiety problems which led to refusal of food for a while. (He was already under a paed at the Child Development Centre after I mentioned his "hand-flapping" at his 3 year dev. check, but was initially thought to have dyspraxia.) The CP has said she is pretty certain it is AS.
I will let you know how the assessment goes later!

goodness. I wish I had found this site earlier. it is so comforting to know that there are other Mum's out there who know what it's like and can talk to each other like this. I hope your test day went ok today Tiggiewinkle.
absolutely at my wits end yesterday I sat my ds1 down in front of his father and tried to summise our day which included (amongst other things but this was the worst) for the second day refusing to let his ds2 into our family car and locking himself in it. I can only unlock my drivers door because someone keyed my passenger lock when I was working one evening in town. this makes it difficult to unlock the car and get ds2 in the other side when this type of situ happens. anyways. ds1 in his difiant 'I'm in charge I'll do what I like' and with a satisfying smile hit the car next to mine in the carpark and I'm ashamed to say I was VERY cross, VERY stern got ds2 in through my drivers door and into the back. strapped him in and drove home ranting. I feel awful about the other car which took a dent and our red paint on their white. I told ds1 that damaging other peoples property like this could involve the police if it ever happens again and then I'm not sure how much we can help him and that if I can't trust him to behave then I can't take him out in the car. this is what started me looking for info on aspergers on the net which brought up this site. I've found it sooooooooooooooooooooooo hard being ds1's Mum. I've told very few people and made very few friends because of his behaviour and............ well I could go on for hours but I won't.

not sure my Mum felt it right for me to lay down the law in this way. I didn't know what else to do to make him understand. when I finally sat him down and explained after his first term of dragging him to school in all forms of undress, kicking and screaming literally that someone would be sent to our home if he didn't go to school because it was the law that he did, it did make a difference (although not to his behaviour at school, just getting him there). I guess my own self esteem and confidence as a parent is low and some of that is because I find it very difficult to feel like the adult when ds1 seems to think and act as if he is.

sorry for rattling on................

hi Tiggiwinkle - how's it going? did you find the as test process helpful? I've been thinking of you.

Hi Hawkeye,
Sorry, forgot to post on this thread as well-posted on the other one as to how it went.
DS was given a definite dx of Aspergers. The assessment was basically done by two clinical pyschologists, one of whom was the one we heve seen quite a few times already since January. So she already had quite a good ides of how things are IYSWIM.
Basically they observed DS while they went through the assessment questions with us. There were no tests for DS to do as such.
We do not have the report yet but should be with us in about a week. I am really hoping to see an improvement in the schools attitude once they get a copy-but we shall see!
How are things with you. Do you have any idea as to when you will see anyone re a DX?

Tigiwinkle: good luck with School. I felt ours was very defensive in the beginning so I do understand. I chased for an appointment and got a call last week to say that there is a backlog but should be seen before June. so just hanging on in at the moment School went back today so I'm just hoping it's a good day!

Hi hawkeye-Our schools went back yesterday and DS had a good day
I have not told the school about the DX yet-I am waiting for them to receive the written report, which should happen within the next two weeks. Very interested in how they will react!
Ds is actually much more settled at school now-he seems to have got over the awful anxiety caused by the transition from reception to year 1. (It took about 6 months though).
The problems at home during the holidays were much more marked though-he was so demanding and his need to control every situation was much more apparent. His brothers find it quite difficult to cope.
How are things with your DS at the moment?

Hi Tiggiwinkle. I think we have similiarities. my DS1 has finished the week without any incidents (that I am aware of). I was espeically pleased because he was in his classroom when I helped yesterday and he accepted that I was there to help the Teacher and allowed me to sit away from him. I was so proud of him. He came to me once and hugged me and told me he loved me and then went off into the adjacent room to listen to the story without sitting in the doorway as near to me as possible as he'd done previously. I go in on a Friday for an hour before the end of the day - usually the class is else where but being first week back it was different. I think it has helped him to see me doing what the Teacher asks and he's proud that his Mum helps.
I had four days of complete hell over Easter which was when I put in my first entry. I thinkl a change in routine ie. no school sparked it. also I've always known that when we get into I am not doing or I'll do what I want and that's it! it's as though my DS1 thinks it's a game and continues to do things for attention. I therefore tried to ignore as much as possible on day 4 and suddenly things quietened down and became a lot more manageable. unfortunatley he can get very physical with me and DS2. We also had a long chat and agreed that 'we' have a problem. he tells me he can't help it or forgets to remember to be good and all sorts of different analogies. some when he was 4-5 made it sound like he recognised himself as two different types of people which was scary.
Some fanatastic things also happened over Easter I have to say. Both my children went to a holiday club run by someone we all know and they loved it so much they went back for a second session. They also went together to someone's house on their own - alone and for the first time. I nearly stopped it happening but I'm glad I didn't because a. everything worked out and they've been invited back and b. DS1 grew in self confidence I think.
did you learn why there is such a black and white need to control ? rules are very important too. it seems to spark some terrible 'uncontrollable tantrums' as does the flashword 'no' in our house which I try to avoid.
going to nursery was a nightmare, the foundation year was very difficult but now in year 1 I think ds1 is now beginning to settle. I personally think DS1 may also be dyslexic which runs in my family. this I'm told can not be tested until 7 and possbily not until after the SAT test at the end of year 2.
still waiting for appointment to come through but things are calm and getting back into a routine helps.
gosh I've typed a lot - bet you wished you hadn't asked
take care. we Mum's matter too