Advice about 11yr old getting assessed for AS

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I have 2 children ages 7 and 11, both of whom are soon to be assessed for AS.

My eldest, being 11, is at that age of being more aware and not wanting to be considered different. She is really determined that she doesn't have AS and after our initial appointment with the psychotherapist, she said that AS doesn't exist, it's made up by "tricking people" and that I am just agreeing with the "tricking people". During the appointment itself, she was a bit defensive and denied things like having a history of sleep problems and picking bits out of her food and lining them up around her plate for instance. When I calmly reminder her of things she'd told me about taking ages to get to sleep, she changed her tack to saying that she had probably exaggerated etc. The psychotherapist seemed to be agreeing with her, which might have been to keep her calm I don't know, but she said "yes children can think something seems like hours when they are waiting".

My eldest was so against going to the appointment that I had to offer her a financial reward for being honest and open, because I was so worried she would deny things. She knows there will be more appointments coming up, and now she's had one appointment she's even more resistant to going again. I think she's formed the view that anything that they ask her she can deny because it might potentially be an AS behaviour. I'm not even telling her which behaviours are AS for that reason. However, she knows her sister is also being assessed soon and she is comparing herself to her sister and distancing herself from obvious behaviours she sees in her sister.

I will get a chance to see the psychotherapist alone at the next appointment as it's just for me to go over eldest's developmental history. I did also pre-warn them of her resistance by letter, but I'm worried that she won't end up getting a diagnosis because she recognises enough of what she needs to deny. It doesn't help that my husband is also very resistant to the whole AS thing too, and I'm having to constantly point out behaviours in the children that are AS behaviours. Youngest is easier in that way because she has massive meltdowns very regularly, and it's really clear in her. It used to be exactly the same with eldest when she was younger but she's become relatively more passive recently and hubby seems to have a dulled memory of how bad eldest was when she was also having the meltdowns.

Has anyone had this issue of resistance with their child and how did you get through it? Were the clinicians able to pick up on the AS despite the resistance?

Thanks.

Does the assessment include the ADOS? I don't know as much about the module used for teens, but the one used for elementary aged children has a lot of tasks where symptoms are directly observable by the psychologist rather than relying on someone else's description of the behavior. I was impressed by its construction.

My first impression: Why are you forcing your 11 year old daughter to be assessed? Really. Apart from your seeking the Dx of Asperger's for her, you might want to ask yourself of your own motives. Is this to satisfy yourself? "Financial reward" (aka bribe)? Isn't this appointment supposed to be for her? How is this to her benefit? Really you might want to wait before you take them again for any such appointment/assessment. I think you need to ask yourself before you take on this diagnostic mission.

About your question, were clinicians able to assess AS despite the resistance? Let me tell you that any diagnostician cannot accurately assess an individual when s/he is experiencing other prominent issues (aka, anger, etc.). You need to consider this yourself, and why you feel the need to do this just now.

It's not a question of forcing her. She needs help with socialising as she has a history of big problems in that area which have caused her a lot of distress, and only with an official diagnosis will she be able to access that help and there are other issues she also has. So no, it's not to satisfy myself. I only want the best for my children. The 'financial reward' was, as I said, to persuade her to be honest and open. Knowing she was going to get some money totally took the anxiety out of going, as all she could focus on was the money and what she could spend it on. In fact the financial reward was suggested to me by someone who is diagnosed and who also had to go through this process with their children who are also now diagnosed. Would you like to spend year after year of you and your child struggling because your child has Asperger's traits, which make her distressed, without seeking a diagnosis knowing that it would help? So no, I don't have any selfish motive here, which you appear to be implying without knowing anything about me or our situation and are therefore doing so highly unfairly. Do you not think that after being a parent for 11 years that I would have spent sufficient time analysing the why's and wherefore's before I ever got to this point?! As for leaving it until later, apart from the time she will be unable to access support during that time, as a teenager years down the line she is likely to be even more resistant.

I'm not sure to be honest, they have not told me anything, which is not great because as a parent you would think they would keep you in the loop. She's not a teenager for 2 years so I don't know if they would use a test that they use for teenagers. I have a mass of information that I've prepared for them which will be very informative to the process. I might contact them to ask exactly what testing they do. Thanks.

And another thing, why the hell does any parent get their child assessed!! ! Because the child needs assessing, doesn't mean they will enjoy the process. I have read on many forums of parents facing resistance from their child in this situation, so why on earth you feel the need to question my motives is beyond me. For instance, my children are home educated, but when they were at school they hated it and felt that they were "being forced" to go to school, does this mean that every parent (which is the majority) that sends their child to school has ulterior selfish motives and is doing something unfair to their child. Really.

Just FYI, the ADOS stands for the Autism Diagnostic Observation Scale. It is designed with four modules 1) Nonverbal 2) partially verbal 3) verbal children, young adults and 4) verbal adolescents and adults. The ADOS is important because even when a person is trying to deny they have AS, they are usually not able to hide they have AS. It sets up interactions and scenarios which tend to emphasize aspects of autism spectrum behaviors and interactions which are not easily hidden, no matter how much they are denied. A good evaluator can use the ADOS to help diagnose autism spectrum disorders.

Hi Eureka-C,

thanks, although I knew what the ADOS itself stood for I didn't know the 4 modules it is composed of, so that's useful to know. I've sent an email to CAMHS asking which test they are using, I guess it will probably be the ADOS. The information you gave about how the modules work is also really helpful. Like you say, the interactions will be important because normally the individual will just respond in their usual way so it will get picked up. Eldest is very intelligent, she is above average (in some things about 2 years above age) in most if not all subjects. So she's exactly the type of child that will be harder to assess/diagnose, as well as being female which is different to how males present.

If there is anyone out there who has been in my situation, I would be really grateful to hear how you got through it and any techniques for the resistant child! Thanks.

My son is close to your daughters age and I will state upfront that he was not resistant to being diagnosed, but I might have some things to share that may be of use to you anyway, so here goes...

My son is keenly aware that he is different from his peers and your daughter likely is, too. I think it comes with the age. I think that most kids that age want to fit in. I think you can use this to help you convince her that this is in her own best interest.

...I'm having a hard time making the pieces into a coherent whole, so bear with me...

There are many ways in which people are smart and capable, and many ways in which they struggle. Generally speaking, everyone has things they find very easy because they are naturally wired to do them and things they find very difficult because they are not naturally wired to do them. But there is not a pattern that applies equally to everyone. Some kids may be very "street smart" but have a hard time getting good grades in school, whereas others get excellent grades but are very naive about things that can't be learned in books. Some might be very good at school, but not so good at sports, whereas others might be exceptionally gifted at sports but have a hard time even reading. Even though most people have things they are naturally good at and things that are more difficult, most people can learn to become better at the things that don't come naturally to them.

And like everyone else, she also has somethings that come naturally to her and some that are more challenging.

Academics come naturally to her. Her brain is wired in such a way that the academics that other kids may struggle with come much more easily for her. This is her thing that she is very good at. And it is awesome that she is very good at it. It is a gift and a strength. However, you feel that social things do not come as easily to her, perhaps because she is not naturally wired for it. Share some examples with her. Tell her that these things do not make her bad or wrong; they just make her human. Tell her that as her parent, you want to help her, not just with the stuff that comes easy to her, but also the stuff that comes harder. Getting a diagnosis is simply a key to unlock help that she needs to improve her social skills. It doesn't change who she is and it doesn't take away from all of the great things about her. It's really not much more than a tool that you can use to get her help, so that she can learn to strengthen the things that don't come naturally to her.

I don't know if my point is coming across. What I am trying to say is that my son is always less resistant if I can explain to him how what I am doing or suggesting will help him. But I usually have to get there through praising his strengths first. It may be helpful to take a few steps back and help her really understand why you are doing this. You are not doing this to point out that she is different from other kids. You are doing this because it will help you help her learn to compensate for things that she isn't naturally wired to do.

Good luck.

Thanks InThisTogether,

it's useful to hear your perspective. I did from the beginning, explain to her that she was special, and that Asperger's syndrome isn't an illness, a mental illness nor does it mean that you have anything wrong with you. I also told her, because she was worried about the word 'syndrome' that it's something like Downs syndrome, that the word syndrome just means a collection of behaviours or symptoms. She always knew at school that there was a problem, even if she didn't voice it fully. She used to tell me she wanted a friend (which broke my heart) and that all the children were mean. Even recently, when I reminded her that she had the option of returning to school if she wanted (as we home educate) she vehemently stated that she absolutely wouldn't because of the "mean people". I did try to explain to her that the assessment was to help her, that mummy only wants what's best for her and we can get any help we need once we know. I also told her that if she was so sure she didn't have it, then she had nothing to worry about, that they would find that. So I have already kind of told her things along the lines of what you suggest.

I'm just way too scared to start pointing out the relevant behaviours she has because she is hyper-sensitive to what she takes as criticism (even when done gently) and as she's already in this resistant frame of mind, she might try to hide them during the assessment.

It's a really tough situation. No one can argue that. My daughter is still young (6) but I think she will be more like your daughter as she gets older. She becomes incredibly defensive, even with neutral feedback. If it isn't praise, she has a hard time hearing it.

I wish I had an answer for you, because I can tell how difficult this is for you.

What kind of assistance would be available to her in your country? Is this help she will agree on or would maybe (hopefully) be enthusiastic about getting?

I ask because if you think she would want the help, you could pitch the features/benefits of whatever type of help she would get (social skill training, help learning how to make friends, whatever) if she qualifies. If the help is help she would not want, then you are going to have a tough road getting buy in. This will have to be something you prepare for because if she goes through all this testing and feels sandbagged with help she does not want then she may not cooperate with that either, and you'll have to think if it is worth it to do, and if so, what incentives you will need to put in place.

We had our testing done before kindergarten, and that is a much easier thing. Eleven is a rough age, because they want to do everything on their own.

Thanks ASDMommyASDKid,

this is true as well. I hope access to Asperger's social support groups or something similar, I also feel that she is likely to have issues with independence if I don't get her steered in the right direction now. She has a history of being very resistant to self care, even brushing her own teeth, and she's very niave. Even maybe if there was a suitable school for children with AS that she might be able to get back into the school system. The whole thing is, getting someone to admit they need help. Socialising issues follow her around, even recently we were meeting up with another home educating family for socialising for my children, and a problem arose between the children, luckily I was able to intervene and sort it out eventually, but when she was in school there were constant problems and not having been there it was harder because the schools used to do nothing, when it's one child's word against another's or they say the child is too sensitive etc. At some point she needs to be able to understand that people aren't always necessarily being mean (she even described the psychotherapist we saw as mean) and that she needs to look at alternative ways of seeing things. Very, very hard when someone has an AS brain, because they become focused on a particular way of seeing things. I'm no psychologist myself so I really need access to whatever there is for her (and my youngest). Having AS myself, I identify with their issues, I totally understand much of why they feel like they do, but I'm also therefore not the best person to help them.

I so, so, so wish I'd got this sorted years ago. However, in the beginning I just thought she was a sensitive baby with weird phobias, then I wondered if I was being too protective, then I thought it was somehow my fault, and by the time she was eight I asked the school educational psych to evaluate her, which was a farce and so superficial, without any testing and he said she didn't have it. I didn't know what else I could do and thought I had to accept what they said. I am much better informed now and know how to fight better - I just didn't anticipate that I'd be having to 'fight' my daughter as part of it!

Here's a thread where I posted the same thing about my son some years back: http://www.wrongplanet.net/postp3005095.html#3005095

Here's some other threads that may help you, and I think in the Index there's a section called "disclosure" The emphasis is slightly different, but there's some information there that may be useful to you.

This first one is another person with your same issue: http://www.wrongplanet.net/postt196996.html and a similar discussion that starts here: http://www.wrongplanet.net/postp4680951.html#4680951

Here's other threads on disclosure:

http://www.wrongplanet.net/postp3011793 ... t=#3011793

and this one: http://www.wrongplanet.net/postxf137433-0-15.html

I'm sorry I don't have any real advice, but wanted to share some support. Wrong Planet is a great place to be. My older guy was 8 when he was assessed, but to him this revelation was a very positive thing. He's now 11. His younger brother is just shy of 6.

I would probably reassure her that this isn't something that everyone needs to know about either - it's not a label that you wear for everyone to see, unless you want to, but it will give her more understanding about herself and how/where/why she might struggle with certain things that are seemingly easy for everybody else. It gives everyone else a way to understand exactly where she is struggling as well and potentially ways to understand and help her. My guy has dysgraphia and a major processing/memory deficit, which we wouldn't have known about if we hadn't had this assessment done. I struggled most of my academic life, dropped out of school in my junior year of high school and never went to college because I was convinced that I was just a lazy, unmotivated student. In reality, there are some (now obvious) issues that I also have with memory and processing and I probably have a math learning disability (dyscalculia). With proper supports things would have been much different for me. Even if she isn't interested in going back to public school, I think it's vitally important for everyone to understand both their strengths and weakness and that is one of the major things that you will both learn from the assessment.

One of the things that typically shows up in the IQ testing portion of the assessment is a very characteristic scatter - very much above the board performance in some areas (verbal/perceptual reasoning) and hugely disproportionate low scores in some areas (memory, processing speed). Since your husband is very resistant to the idea of labeling, this is a very concrete, measurable part of the evaluation, not just based on an observable behavior like a lot of the autism rating scales.

You could try giving concrete answers about the name (Hans Asperger was pretty interesting and a syndrome is just a group of behaviors/symptoms like you already mentioned) and give her some positive role autistic role models. Temple Grandin? If she likes science at all, you'll find lots there. I gave my son a warning when he was first assessed that he might hear the word "disability" in reference to himself, from teachers or therapists and explained what that literally meant. Sure, he might have dysgraphia and need a scribe to write more than a few words, but he's an incredible LEGO artist and engineer and missed a perfect score on the state standardized Science test by one questions.

If she has a hard time socializing in person, maybe she could find some friends online who share the same interests as her? My older guy is happy being solitary (he has one good friend in school but isn't interested in doing anything outside of school hours). We recently saw a presentation on an amazing social skills program aimed specifically at high functioning/aspie pre/teens and adolescents, UCLA PEERS. They are coming out with a book aimed at parents next year (I think) but my young guy got a lot of great ideas just from watching the presentation. They give ecologically sound responses that are used by actual kids/teens for verbal teasing/bullying, not just the same old answers that adults always give (ignore it, walk away, tell an adult) and explain things like how to join a conversation, what to do if you are rejected - stuff like that. On the main page is a link to a video about learning to flirt that is part of that program - obviously for young adults and not young kids. :/

I'm a big proponent of the ADOS, since it's not a parent rated evaluation. Not that those types of evaluations are bad or unreliable, but there are very specific measures that the administrators are objectively trained in scoring. My younger son also qualifies as being AS, but is missing some very characteristic behaviors (no special interest, in particular) but scored very highly on an ADOS administered by the UM autism genetics team. When we went in for a transition meeting and the "team" wanted to disqualify my son for ASD as a primary exceptionality (based on his classroom performance and behavior) both me and the regional autism specialist said no, mostly on the basis of that ADOS. They can't legally just take it off anyway - until they do a reassessment, but all of the assessments that the school district did were based mostly on my observation with a short direct observation/eval by the school psych, but they still have to take the ADOS into account.

Sorry this post is so long. I don't post to WP very often, so when I do, I make up for it in length of post.

Thank you so much momsparky, I will have a look at those and I'm sure there will be some really helpful stuff.