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9 yo. possible Aspergers or HFA..

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peaceall
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07 Jun 2013, 2:35 pm

My son is 9, and has struggled since day one. He has had major speech delay's as a toddler (18mo. level at age 3), struggled greatly with meltdowns, emotional cognitively, transitions, obsessions, peer relationships, fine motor skills, lowered pain levels, etc. We are on a second psych. assessment required by our school to obtain funding, and I was holding my breath they would finally come out with Aspergers or HFA, and they say no! Apparently the school has given them information completely contrary to what we have observed, leading towards respect issues, and there has been over-diagnosis of Aspergers, so they don't want to give a coding that would stick with him forever....

We are literally at whits end, we have been fighting for him since day one, and without structure such as a behavioural checklist, transitional aids, fidgets, learning assistants, and constant reminders he is completely at odds during school. Not only that they are trying to downplay the teasing and bullying he is receiving throughout the school year, that causes his meltdowns, stating that it is him who is the bully, because the other kids are able to articulate, team up and mould the story to their defence. However, there is more to his meltdowns at school then disrespect, it is usually triggered by an inability to control a peer relationship (ie. he plays better with grade 1 kids then 4 because he has more control over the situation), and to adapt and learn Mine Craft (new topic out of his obsession) or communicate and understand the topics that the other boys his age are interested in. I see a child that really wants to be accepted, and have friends, but is unable to understand underwritten rules and the basics of relating to other kids his age, and is having melt downs that can become physical if instigated (ie. threatening to beat him up) because he is at a heightened state of anxiety.

Right now we are facing a severe transitional coding, with fine motor skill delays, but this won't help us gain the funding needed to get him into a behaviour modification program or social skills groups/camps. Which from knowing others with Aspergers I know that these programs can make a huge difference. My background with people who have it are: my niece, brother, father-in-law (he was severe), father, as well as myself (high functioning).

Any thoughts on whether we should pursue a second opinion? We will be meeting with a paediatrician to help us gain more insight and access to funded psych programs, but I am wondering if we should pursue having them look into the Aspergers/HFA as well...

Thanks for your insight! RM



ASDsmom
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07 Jun 2013, 10:39 pm

peaceall wrote:
Apparently the school has given them information completely contrary to what we have observed, leading towards respect issues, and there has been over-diagnosis of Aspergers, so they don't want to give a coding that would stick with him forever....
How do you know this? Did they lie? Did they confess they've held back during the evaluations so he wouldn't be marked with this label?

Quote:
Not only that they are trying to downplay the teasing and bullying he is receiving throughout the school year, that causes his meltdowns, stating that it is him who is the bully, because the other kids are able to articulate, team up and mould the story to their defence.
Where are you getting this information from? Are you at his school? Do you have a credible source that's witnessing this? Are they able to speak out on his behalf?

Quote:
Any thoughts on whether we should pursue a second opinion? We will be meeting with a paediatrician to help us gain more insight and access to funded psych programs, but I am wondering if we should pursue having them look into the Aspergers/HFA as well...


My opinion is to separate fact from opinion so you become the credible source. If you feel your child is in the spectrum then that's the direction you should take. Reading from this post alone (IMO) it sounds like there's a lot of assumptions being made about your son at school. You need to speak with someone you trust at school (support worker, teacher, etc) who can monitor closely via check list - ABC - antecedents, behaviour, consequence.. and see if they notice a pattern.

Of course, now it's mid June. You're probably not going to have a lot of success with the school. Will he be involved in any summer schools, camps, daycares? If so, you can have them monitor these behaviours as well. If not, I guess you'll have to wait until September. I'm not sure why the school would be so resistant though .. unless they're just unqualified to detect these things.



peaceall
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08 Jun 2013, 12:41 am

Quote:
How do you know this? Did they lie? Did they confess they've held back during the evaluations so he wouldn't be marked with this label?
They admitted that they didn't want to give the coding, and would only feel comfortable in an extreme case, and would rather he see someone who specializes in it or a paediatric psychiatrist to firmly diagnose the case. Stating in their opinion it is over diagnosed. As well did not see classic symptoms such as hand flapping and rocking during their sessions, feeling that the indicators were not there.

Quote:
Where are you getting this information from? Are you at his school? Do you have a credible source that's witnessing this? Are they able to speak out on his behalf?
We have full daily report summaries from the school (his aid) stating his melt downs and the situations surrounding them. The teachers have admitted that there is teasing, ridiculing, and ostracizing of him, and that they were doing their best to control it in the classroom environment but what happens on the playground is out of their control. After a recent incident, went back to the principal, confronted him with what we were told, he then brought the students aside, and found out the truth. We have had to do this numerous times lately, one of which another parent informed the teacher of an incident where there son and some peers were teasing DS, and they were upset with how DS reacted.


Quote:
My opinion is to separate fact from opinion so you become the credible source. If you feel your child is in the spectrum then that's the direction you should take. Reading from this post alone (IMO) it sounds like there's a lot of assumptions being made about your son at school. You need to speak with someone you trust at school (support worker, teacher, etc) who can monitor closely via check list - ABC - antecedents, behaviour, consequence.. and see if they notice a pattern.


Yes! I am going to talk to them again, as the special ed teacher suspects he is as well. Thank you for the encouragement. The ABC could go well with his behaviour checklist, in monitoring incidents.

Quote:
Of course, now it's mid June. You're probably not going to have a lot of success with the school. Will he be involved in any summer schools, camps, daycares? If so, you can have them monitor these behaviours as well. If not, I guess you'll have to wait until September. I'm not sure why the school would be so resistant though .. unless they're just unqualified to detect these things.


I will see about the monitoring at some camps he is attending, thankfully with the right councillors at his overnight camps (whom know him by now!) they are a success for him. The school resistance is a combination of things, and the principal is not very perceptive to what we have to say, and has blamed us for how DS acts, which is quite frustrating. We are starting to wonder if he is adverse to having someone difficult in the school, or working with them, especially since he has suggested we send DS to a private school for behaviourally challenged children. With the Special Ed. teacher on a part-time basis as well as his aid, they may be struggling to properly detect it. Hopefully we will have something before the fall though.



zette
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08 Jun 2013, 12:42 am

I would recommend getting a private assessment if possible, from a developmental psychologist. Your insurance may cover at least part of it.



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08 Jun 2013, 1:20 am

Some schools "get" ASDs and some don't. Some "get" it but pretend they don't for budget reasons. Either way, if your instincts are telling you one thing and the school refuses to respond, you may need to move your child.

Way back in preschool I kept my son in a situation that was not working for him. Never again. I was so afraid of the stress of switching, without fully realizing that things really did not have to be the way they were. Our children can be happy with their schooling, when things are handled properly, and they deserve that.

There is no single answer as to what is right for every child and every family, but never let go of your gut instinct, and don't stop advocating for your child until you have found something that works for him. There are a lot of schools that don't serve ASD kids well, and it really does not have to be that way. Some families move districts. Some choose private schools. Some homeschool. Some hire an advocate and force their school to adapt. None of those are easy roads, and I am sorry to hear that your are in a school that isn't helping you resolve all this effectively and supportively. I wish I knew more of what to tell you as far as pushing through those challenges, but I'm afraid I don't have much to offer beyond this "trust your instincts" speech. Hopefully other parents here will have some more constructive suggestions.

Also, if you are in the US, look up Wright's Law for your rights.


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08 Jun 2013, 12:47 pm

peaceall wrote:
My son is 9, and has struggled since day one. He has had major speech delay's as a toddler (18mo. level at age 3), struggled greatly with meltdowns, emotional cognitively, transitions, obsessions, peer relationships, fine motor skills, lowered pain levels, etc. We are on a second psych. assessment required by our school to obtain funding, and I was holding my breath they would finally come out with Aspergers or HFA, and they say no! Apparently the school has given them information completely contrary to what we have observed, leading towards respect issues, and there has been over-diagnosis of Aspergers, so they don't want to give a coding that would stick with him forever....

We are literally at whits end, we have been fighting for him since day one, and without structure such as a behavioural checklist, transitional aids, fidgets, learning assistants, and constant reminders he is completely at odds during school. Not only that they are trying to downplay the teasing and bullying he is receiving throughout the school year, that causes his meltdowns, stating that it is him who is the bully, because the other kids are able to articulate, team up and mould the story to their defence. However, there is more to his meltdowns at school then disrespect, it is usually triggered by an inability to control a peer relationship (ie. he plays better with grade 1 kids then 4 because he has more control over the situation), and to adapt and learn Mine Craft (new topic out of his obsession) or communicate and understand the topics that the other boys his age are interested in. I see a child that really wants to be accepted, and have friends, but is unable to understand underwritten rules and the basics of relating to other kids his age, and is having melt downs that can become physical if instigated (ie. threatening to beat him up) because he is at a heightened state of anxiety.

Right now we are facing a severe transitional coding, with fine motor skill delays, but this won't help us gain the funding needed to get him into a behaviour modification program or social skills groups/camps. Which from knowing others with Aspergers I know that these programs can make a huge difference. My background with people who have it are: my niece, brother, father-in-law (he was severe), father, as well as myself (high functioning).

Any thoughts on whether we should pursue a second opinion? We will be meeting with a paediatrician to help us gain more insight and access to funded psych programs, but I am wondering if we should pursue having them look into the Aspergers/HFA as well...

Thanks for your insight! RM


My daughter was diagnosed as autistic this year. She does not hand-flap or stim (other than a little hair twirling sometimes). Also, they told me school reports are not always helpful, when I questioned this with them, because it is known that many autistic children hold it all in at school. From the sounds of it, your son is blatantly displaying signs at school which makes it incredible that they are trying to fob you off with other reasons. Schools are not clinicians and no matter what their opinion, the psych should not be using that as a reason.

Even if your son was being a bully, some autistic children do bully! So they can't use that as an excuse as to why he isn't autistic.

Whichever psychiatrist/psychologist you have seen is definitely not an expert in autism and frankly doesn't know what they are talking about. A tip: never just go to any old psych - although they are legally allowed to diagnose that doesn't mean they are experienced or knowledgeable enough to.

You really need an ASC specialist, one who does not have stereotypical, outdated views on autism. As people round here keep saying, we are not all rain man!

Are you in the UK? (Your spelling of "mould" leads me to think so). Schools sometimes try to get away with denying things because they don't want to have to supply the supports. You can still apply for a statement of SEN in the UK if that's where you are, even without a diagnosis, until you get one sorted out.

As you have AS yourself, he is already at higher risk.


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peaceall
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09 Jun 2013, 12:36 am

Thanks for all of the supportive responses! Will definitely look for a specialized practitioner here, and get the ball rolling.

Quote:
My daughter was diagnosed as autistic this year. She does not hand-flap or stim (other than a little hair twirling sometimes). Also, they told me school reports are not always helpful, when I questioned this with them, because it is known that many autistic children hold it all in at school. From the sounds of it, your son is blatantly displaying signs at school which makes it incredible that they are trying to fob you off with other reasons. Schools are not clinicians and no matter what their opinion, the psych should not be using that as a reason.

Are you in the UK? (Your spelling of "mould" leads me to think so). Schools sometimes try to get away with denying things because they don't want to have to supply the supports. You can still apply for a statement of SEN in the UK if that's where you are, even without a diagnosis, until you get one sorted out.

As you have AS yourself, he is already at higher risk.


We are in Canada (raised by British parents though:)) so we are covered by a few advocacy laws. Insurance is going to pay for the current assessment, but thankfully my parents want to make sure that he receives a second opinion as they see the ASD too, and have offered to pay, as we are looking at a significant wait through provincial health.

Also, he does have a reaction that is not definition hand flapping when becoming more anxious, where he taps objects as if to gain awareness of his surroundings in an odd manner (I.e. grocery store shelves, here and there while walking down an isle). But to my dissapointment they don't think this is odd...

In the meantime I will try to implement more strategies and get him settled down to finish this year. Hopefully the bullying will settle down,and if it is his melt downs, the calm down and social strategies will help quell them for a bit.