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How to prepare for assesment

R

It is nearly 2 1/2 years since a teacher first mentioned to me that they thought my son might have Asperger's Syndrome and in just under 2 weeks we finally have the assesment coming up.

I am feeling so worried about this at the moment.

On one level I know that a diagnosis won't change anything, he is who he is regardless of what they say. I know he thinks differently from other 9 year olds and that has amazing benefits for him as well as causing him frustrations and anxiety. I don't want to change him. I do want to help him. I want to help him, who wants so desperately to understand everything in such detail, to understand why he feels different and why he finds some things so tricky. I want to be able to explain to his grandfather that he's not naughty. I want to know what to put on a form when I sign him up for an activity that I wont be there for, that will help others who are going to be looking after him understand him. And I want a piece of paper I can take with me when I'm investigating secondary schools and to wave about when I talk to the SENCO/teachers once he's there (because I have a lot of worries about how he's going to cope there). 

I know he has autistic traits, because we wouldn't have managed to get to this point in the assesment process if he didn't.

I know that he's not severely autistic.

It seems to me that there is a degree of subjective opinion when an Autistic Spectrum Condition is diagnosed. There is no yes/no blood test or similar. To some extent it's a judgement call.

And I worry that he sits somewhere on the border between diagnosis and not and that he won't tick enough boxes to warrant a diagnosis.

The appointment is for an hour. Someone will be with him for an hour whilst someone else talks to us. I don't know if that is the whole process or if more will follow.

It seems a ridiculously small amount of time to make a diagnosis.

I am worried that I will forget to say something or won't phrase something in the right way and that my slip up will mean he doesn't get enough points for a diagnosis.

And at the same time I feel guilty that I might be exagerating how he is in order to label him, so that I feel less bad when I find him hard to cope with, as then it's his fault not mine.

I have absolutely no idea how to prepare for this process. I have no idea what form it will take. I have tried writing notes and they come out pages long, far too long maybe for an hour conversation.

And I have no idea how to tell him about the appointment. I know he won't want to go. We went to see the Community Paedatrician recently and he found that stressful. I need to give him enough warning (as he doesn't cope well with surprises) but not too much as I don't want to cause him lots of worry.

Basically I'm just really worried and nervous right now, I have spent the last two and a half years being impatient for this assesment to happen and now we're nearly there I don't want the day to come because I'm worried about the outcome.

Parents

  • Hi R.  I'm a newbie but read your post and felt compelled to comment.  Your situation with your son sounds similar to ours.  We went for assessment last Thursday and found it all straightforward.  My husband and I sat in one room and answered a series of questions about our son, including lots of things that gramit108 mentions above. But it didn't feel like an interview, or question and answer session, it felt like a chance to chat to someone who understands, about how great our son is and how fantastic we think he is, his tremendous strengths, but his quirks too, and his funny ways.  She made lots of notes as we went along, and we did answer her queries, but they felt more like prompts to keep us on track.  Not sure I'm making any sense!  

    Our son was in the room next door - he said afterwards that he had to look through a picture book and tell the story.  He had to choose some items from a selection and use them to tell a story.  He had to put some cards in order of how he thought the story went.  He seemed to enjoy the 1:1 time and attention!  

    We were there well over an hour.  At the end our lady said that she would discuss her findings with the other lady who'd been with our son, and if they matched it would be discussed at a meeting this week (tomorrow) and we would hear within a week or so.  If it didn't match they would probably see him again, maybe at school.  The whole thing lasted about 90 minutes (our son does have a tendancy to talk!)  

    This seems very simplistic and it was a little more involved but these are the basics.  We were just honest with our answers.  If we didn't remember doing something as a baby we just said so.  We didn't feel there was any "right" or "wrong" answers so stuck to the truth.  We will see what happens.  He gets quite a lot of help at school, which I don't think will stop, whatever the outcome of this, but if he does need help in the future, we're like you and think a piece of paper with an official diagnosis will help.  

    Try not to worry, you can only do your best, which it sounds like you're doing.  Oh, our son is 8, year 3.  

Reply

  • Hi R.  I'm a newbie but read your post and felt compelled to comment.  Your situation with your son sounds similar to ours.  We went for assessment last Thursday and found it all straightforward.  My husband and I sat in one room and answered a series of questions about our son, including lots of things that gramit108 mentions above. But it didn't feel like an interview, or question and answer session, it felt like a chance to chat to someone who understands, about how great our son is and how fantastic we think he is, his tremendous strengths, but his quirks too, and his funny ways.  She made lots of notes as we went along, and we did answer her queries, but they felt more like prompts to keep us on track.  Not sure I'm making any sense!  

    Our son was in the room next door - he said afterwards that he had to look through a picture book and tell the story.  He had to choose some items from a selection and use them to tell a story.  He had to put some cards in order of how he thought the story went.  He seemed to enjoy the 1:1 time and attention!  

    We were there well over an hour.  At the end our lady said that she would discuss her findings with the other lady who'd been with our son, and if they matched it would be discussed at a meeting this week (tomorrow) and we would hear within a week or so.  If it didn't match they would probably see him again, maybe at school.  The whole thing lasted about 90 minutes (our son does have a tendancy to talk!)  

    This seems very simplistic and it was a little more involved but these are the basics.  We were just honest with our answers.  If we didn't remember doing something as a baby we just said so.  We didn't feel there was any "right" or "wrong" answers so stuck to the truth.  We will see what happens.  He gets quite a lot of help at school, which I don't think will stop, whatever the outcome of this, but if he does need help in the future, we're like you and think a piece of paper with an official diagnosis will help.  

    Try not to worry, you can only do your best, which it sounds like you're doing.  Oh, our son is 8, year 3.  

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