Advice for telling a 10yr old he has aspergers?

[spudulika]

Hi everyone. Im hoping I can get some advice from people who have been through the same thing. My son is 10 and was diagnosed a short while ago with aspergers. They also think he suffers from tourettes but we are still awaiting a firm diagnoses on that one.

 

We havnt told my son about the aspergers diagnoses as we wanted to learn as much as we could so we would be able to answer any questions he will have, and Im sure he will have plenty. We have recently received all the paperwork that the Autism Assessment and Diagnostic Service has sent us and have done lots of research online, this forum has been great too. We now feel the time is right to tell him but arnt quite sure of the best way to do it. Any advice on this would be a great help.

 

He is going into primary 7 at the beginning of Sept and during the last school year he missed so much due to refusing to go. Eventually the education welfare officer became involved and if he refused to go to school she would physically come and get him. He realised that he couldnt get away with it anymore and even though he isnt happy about going, he knows he has no choice. The beginning of the new school year has always been a challenge and its only now we realise exactly why. Its a big change in his life. We need to speak to his headmistress and his new school teacher too, I know I need to ask about an IEP and get one put in place and also if its necessary to have an Education psychology referral. Other than this I have no idea what to ask the school, can anyone give me any advice as to what I should be doing on the school front.

 

Getting his diagnoses was a major relief for us, but its only now hitting us as to how little we know. Thanks in advance to anyone who replies.

 

Lou

[KezT]

have you spoken to him at all about all the appointments/assessments? does he recognise he is different from his peers? both of these can be good starting points....

[Suze]

As far as school goes, speak to senco, also see if there is an autism advisor who can go into school.Very often these are a good start as far as making suggestions that can help your son.Have the school identified any particular areas he has difficulty with.Such as break times , dinning hall, PE etc.

 

.............my son was 7 yrs when he was dx , he by this time knew there was something different about him,self and the dx was a way of explaining this .Good luck xx

[spudulika]

Hi KezT and Suze, thanks for the replies. When K first started going to CAMH's we told him it was to see if we could help him with the anger and frustration he was experiencing. AS had been mentioned, but we were always told he displayed some of the symptoms but not enough to make a positive diagnoses. K would be a massive worrier and I didnt want to say it may be Aspergers incase it wasnt and have him worrying over something that may not even happen. It was during the week long group assessment that he was given a letter to give to me (it just contained the date and time for a meeting to discuss the outcome of the assessment) but it did have the Autism Assessment and Diagnostic Service on it. He asked me if he could see the letter and I couldnt really refuse. He asked what it meant so I just briefly explained that he has had lots of tests to make sure his hearing was ok, that his insides were ok (he has problems with pooing in his room and hiding it)and so far everything was coming back normal so they were checking for something called Aspergers. He kind of knew what Autism meant so I told him that Aspergers was a kind of Autism but anyone who has it is extremely smart at certain things and I pointed out how good he was at his lego building and his history of world warII and his knowledge of all the different planes in the war. I explained how people with Aspergers may find it hard to make new friends or may feel uncomfortable doing something new to them. It may explain why his temper is the way it is as people with Aspergers find it harder to describe their emotions and also why he dosnt like to leave the house or hates it when anyone comes in the house. I told him that we didnt know for sure if it was Aspergers, but if it was it just meant that he was a very very smart boy. He seemed to accept everything I said and for once didnt ask any questions (normally he questions EVERYTHING).

 

Suze, Can I ask what is senco? I live in N Ireland so Im not sure that things are the same over here, I cant imagine it being that different though. I am still very new to all this and find a lot of abbreviations confusing. He missed so much school last year as he point blank refused to go and even though he is only 10 he is too big to carry him out the door. He would lash out and kick, scream, wreck the room ect. Eventually the Education Welfare Officer became involved and seen him in school every day. If he refused to go to school she would personally come and get him. It got to the stage where if he was refusing to go all we had to do was ring the school infront of him, then his class teacher would tell him to get into school as soon as possible otherwise someone would come and collect him. Once he realised that we were calling his bluff and the temper wasnt working anymore he started to go, his attendance is now in the 80% range rather than the 60%. It turns out that he didnt like the playground as the whole school has to line up outside and be brought in class by class, it was even worse when it was raining as they all had to gather in the gym hall. We discovered that he dosnt like crowds and also the noise in the playground/gym hurt him. He cant seem to filter out background noise. The school agreed to him coming into school 10mins later than everyone else so he wasnt having to line up ect, he is also allowed to stay inside the school at breaktimes if he wants. I have to say that so far the school have been brilliant and Im hoping it will get easier for him now we know what is wrong with him and if he needs extra support then Im pretty confident he will get it. I just have no idea if theres something I should be spefically asking?

[KezT]

I explained to my son when he was dx'd at 7 - but basically I kept it really simple to start. You have been dx'd with ASd, it means that your brain works slightly diferently to most other people which means you are good at somethings that othes find difficult (lego and remebering facts in your son's case) and find some things that others find easy to be really difficult such as how to behave well, and when to be quiet and what to say to people...

 

As he's got older and recognised more he's asked for more info and started researching it himself too.

 

I think the most important thing is to give your son a sime fact "you have been dx'd with AS" then allow him to ask any questions he wants - it's sure to be a very worrying time for him.

[Suze]

hi the senco(special educational needs co ordinating officer) would be the member of staffs who handles any of the SEN at school.By the sounds of it though the school have been on the ball about helping him , ie letting him leave the playground later.We told our son in a similar way , a culmination of appointments etc and talking about stuff, our son was relieved in the end , good luck xx

[lindy2017]

Hi everyone. Im hoping I can get some advice from people who have been through the same thing. My son is 10 and was diagnosed a short while ago with aspergers. They also think he suffers from tourettes but we are still awaiting a firm diagnoses on that one.

 

We havnt told my son about the aspergers diagnoses as we wanted to learn as much as we could so we would be able to answer any questions he will have, and Im sure he will have plenty. We have recently received all the paperwork that the Autism Assessment and Diagnostic Service has sent us and have done lots of research online, this forum has been great too. We now feel the time is right to tell him but arnt quite sure of the best way to do it. Any advice on this would be a great help.

 

He is going into primary 7 at the beginning of Sept and during the last school year he missed so much due to refusing to go. Eventually the education welfare officer became involved and if he refused to go to school she would physically come and get him. He realised that he couldnt get away with it anymore and even though he isnt happy about going, he knows he has no choice. The beginning of the new school year has always been a challenge and its only now we realise exactly why. Its a big change in his life. We need to speak to his headmistress and his new school teacher too, I know I need to ask about an IEP and get one put in place and also if its necessary to have an Education psychology referral. Other than this I have no idea what to ask the school, can anyone give me any advice as to what I should be doing on the school front.

 

Getting his diagnoses was a major relief for us, but its only now hitting us as to how little we know. Thanks in advance to anyone who replies.

 

Lou :)Hi, My son 12 yrs old has home tutor due to him not being able to go to school due to anxieties.....we,re being assessed with CAMHS hope to get dx soon my 3 older children have traits i think it is aspergers or soemthing on the specturm.....he gets so uptight about anything to do with school in spetember he will be going to a nurture unit connected to local school he is anxious about this as well..........ive got community mental ehalth nurse today to talk more about him and his problems so he can refer back to dr who is dealing with his dx .....he worries about him coming tot he house might not come downstairs have to wait and see............i am truly shocked about them saying they would physically come and get him ........my son talks about killing himself when having meltdowns ......he has obsession with pc and is clever........lindy

[Dijac]

Hi,

 

I am in France, so a different system again. My son is also 12 ys.o. But he has been provisionally diagnosed by psychiatrist this year, but we are waiting for an official assessment by autism society.

 

He is getting very stressed for the back to school in September. He still goes to a normal school, but has jumped a year - his main problems are breaks and lunchtime. LAST year he went to the canteen 2 days, then home for lunch 2 days (they only do half day here on weds) - but I think he will come home for lunch all the time this year. He needs to walk back and forwards to destress a lot, but knows he gets gets teased if he does it at school - so coming home for a couple of hours lets him have this opportuntiy. We have just started talkingto social workers too, and they may fund him going to a special childminder lunchtime if I can't get him due to work.

 

He also gets very stressed and agitated, and threatens to kill himself, or his brother(9), when he gets really stressed. And he gets really stressed when I limit the pc - so I have to set limits before hand, and sometimes I have to accept he will have a meltdown when it is time to come off.

 

I don't know much to advise you - my son has always known he was different, and he was very angry when we first mentioned AS, but now he has researched it a bit himself, he admits it expalins a lot. Although be careful, if he is very clever like my son, he soemtimes tries to use it to excuse things - (I can't help it, I have AS!!) type thing, which we try not to allow..

 

Diane

[spudulika]

Thanks everyone for your replies, We told him this afternoon. We sat him down and started off the conversation by saying about all his appointments at CAMH's and his medical appointments and I asked him if he remembered looking at the letter he got from the group assessment. He said he did so I told him that they had finally discovered he had As and it meant that he was really smart and clever in the things that he was interested and also that it explained why he found certain things uncomfortable or couldnt bear to do certain things that most other people have no problem with. He went off on one thinking that it was a really bad thing but after a bit of comfort and some more explanation that it meant we could help him find ways to overcome the things that he finds difficult and in no way at all was it a bad thing, if anything it was infact a good thing, he finally calmed down. He lay on the sofa with a fleece blanket covering him and his face (he would do this if he is upset) so I went over to him and gave him 'butterfly kisses' and just held him and didnt speak. He eventually gave me a hug and went off happy as can be. He is the kind of child that will think about things and it will be in a day or two when he starts asking us all the questions.

 

He dosnt go back to school until next Thurs so I rung this afternoon to see if I could get an appointment with the head mistress and his new class teacher so we have to go on Tues at 1.30. Im a bit worried about his class teacher as he actually taught me when I was at that school and I didnt get on with him at all, he actually made my school life hell. I will be keeping a really close eye on that side of things, on the plus side I have also found out that the same teacher has been actively involved in teaching children with special needs so I may be worrying for nothing. I know the head mistress will do everything she can to help him and will make sure he gets any help if he needs it. She has been fantastic so far.

 

Once again, thankyou so much to everyone who replied