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  1. #1
    PunkyBoo is offline Platinum level (1000+ posts)
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    Default Late ASD diagnosis, questions

    DS2 had been seeing a therapist and she believes he most likely has high functioning autism. He's 8.5. Until this past year, nobody ever suspected ASD, but he has always had behavior issues and certain quirks. In speaking with the therapist, I can see why she believes it, so we have an appointment for assessment next month. Has anyone here dealt with such a late diagnosis? I always thought that autism wasn't really a concern once kids are school aged, that by then you'd know if the child had it.
    Also I haven't discussed it with DS2. How should I explain to him what the appointment is, what the assessments are for, etc? He has a cousin who is autistic so we've always told our boys that it's just that the cousin's brain works a little differently so he struggles with certain things. But I think it would be hard to tell DS2 that his own brain works differently... Any advice for me?
    Please excuse all my typos- typing on a kindle fire!
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  2. #2
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    His therapist might have some suggestions for what language to use to phrase the need for the assessments. My DS had an early diagnosis, so I can't speak to that. I did however make sure when we started explaining autism to him (around age 5?) we started the conversation emphasizing the differences that are strengths for him (e.g. incredible memory, learning to read during preschool, etc.) - calling them his "autistic superpowers" -- and de-emphasized the differences that are struggles for him. He's 9 now and when he tells me about what he remembers of those early conversations, it is with statements like "I was so excited to learn I have autism!" Even with the struggles, we try to frame them as things that by learning more about, we are better able to make sure we create supports for. e.g. his need for strict routines just means at home and school, the adults will provide daily schedules so he knows when there are deviations and can mentally prepare better for them.

    (ETA: if you can avoid using the term "high functioning" vs "low functioning" when explaining the diagnosis too, that is something I would highly encourage. The autistic community hates those labels with a passion because it dismisses a whole group of autistics who are considered 'less than" just because they aren't able to communicate verbally.)
    Last edited by annex; 07-21-2017 at 09:59 AM.

  3. #3
    PunkyBoo is offline Platinum level (1000+ posts)
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    Quote Originally Posted by annex View Post
    His therapist might have some suggestions for what language to use to phrase the need for the assessments. My DS had an early diagnosis, so I can't speak to that. I did however make sure when we started explaining autism to him (around age 5?) we started the conversation emphasizing the differences that are strengths for him (e.g. incredible memory, learning to read during preschool, etc.) - calling them his "autistic superpowers" -- and de-emphasized the differences that are struggles for him. He's 9 now and when he tells me about what he remembers of those early conversations, it is with statements like "I was so excited to learn I have autism!" Even with the struggles, we try to frame them as things that by learning more about, we are better able to make sure we create supports for. e.g. his need for strict routines just means at home and school, the adults will provide daily schedules so he knows when there are deviations and can mentally prepare better for them.

    (ETA: if you can avoid using the term "high functioning" vs "low functioning" when explaining the diagnosis too, that is something I would highly encourage. The autistic community hates those labels with a passion because it dismisses a whole group of autistics who are considered 'less than" just because they aren't able to communicate verbally.)
    I'm really sorry, I didn't mean to be offensive at all, I was just using the terminology she did. Thank you for your response!
    Please excuse all my typos- typing on a kindle fire!
    Member of "I Love Brussels Sprouts" Society
    Mama to DS1 Punkin (2/04) and DS2 Boo (1/09)

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    Quote Originally Posted by PunkyBoo View Post
    I'm really sorry, I didn't mean to be offensive at all, I was just using the terminology she did. Thank you for your response!
    No offense taken! The medical community I have found likes to use those terms especially and I used "high functioning" too for a long while for my DS because it was a quick way I thought to let people know where he was on the spectrum. Autism comes in so many varieties though that I'm hoping as more people understand that every kid exhibits different strengths and struggles with the diagnosis (and those vary in different settings with/without supports - take away some of my kid's supports and he'd quickly be unable to function even though he is verbal.) I hope our communities learn to build inclusive environments that support all kids and adults with autism.

  5. #5
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    AnnieW625 is offline Black Diamond level (25,000+ posts)
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    I am not dealing with autism, but with inattentive ADHD (previously known as ADD) with DD2 and we were honest with her about her diagnosis (she was diagnosed at 6/1/2 last December) and we told her that sometimes it just takes her longer to get her work done and she needs extra help focusing. She calls her daily medication "focus medicine" and that is part of how she deals with her diagnosis. Good luck.
    Annie
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    It's actually sort of common to diagnose autism later--but more with girls. I personally know of 2 10-13 year old girls who were diagnosed with autism in the last 6 months. Some kids have "good enough" social skills etc despite their quirks that they can function well for a while. And then the expectations/society norms trend upward and those kids are "stuck" or start acting out. Ask your son's therapist how to explain the testing etc. He/she will have very good ideas especially because they know your son.
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