Young child maybe gifted, maybe delayed. What now?
August 7, 2014 5:09 PM Subscribe
My nephew at 20 months does not talk and has some social delays, and his pediatrician is urging my sister to pursue early intervention. The problem is, he also shows early signs of giftedness. Giftedness runs in our family and our mother (who is versed in gifted education) is strongly against introducing him to the early intervention "system" because it could result in a misdiagnosis that hurts him for years to come. I've heard similar warnings from other parents of gifted youngsters. We want to do the right thing for him but aren't sure how to proceed.
Some more specific details, if it helps:
- Nephew is in a major metropolitan area in the U.S. so I would imagine that the early intervention resources there are reasonably good. I don't know details about how it would affect his future in the public school system though.
- Good news: Nephew communicates nonverbally very well (points/signs/grunts), makes eye contact, doesn't stim, and shows signs of healthy attachment (separation anxiety, showing toys to parents). He seems to understand most of what you say and can respond to commands. He has hit other milestones on time.
- Bad news: Nephew has very limited babbling, and has never used a word to refer to an object or person (even mom and dad). He has never been affectionate and resists hugging/snuggling/comfort. It's very difficult to engage him socially and direct attempts to get his attention (calling his name etc) usually go ignored.
- Maybe good, maybe bad news: He has an exceptional memory. At 15 months he could pick out every letter in the alphabet. A month later he could say several of them by name. He also has good spatial reasoning and can solve puzzles meant for much older children. I've spent a lot of time with him and he definitely gives the impression of being very bright and alert, if not always totally "there."
FWIW, I'm personally in favor of going ahead with some evaluations and speech therapy (what could it hurt?), while I think she is leaning against it. But I'm willing to be proven wrong and I have heard enough stories of misdiagnosis that I wanted to see what wisdom the hivemind could offer. Thanks!
Some more specific details, if it helps:
- Nephew is in a major metropolitan area in the U.S. so I would imagine that the early intervention resources there are reasonably good. I don't know details about how it would affect his future in the public school system though.
- Good news: Nephew communicates nonverbally very well (points/signs/grunts), makes eye contact, doesn't stim, and shows signs of healthy attachment (separation anxiety, showing toys to parents). He seems to understand most of what you say and can respond to commands. He has hit other milestones on time.
- Bad news: Nephew has very limited babbling, and has never used a word to refer to an object or person (even mom and dad). He has never been affectionate and resists hugging/snuggling/comfort. It's very difficult to engage him socially and direct attempts to get his attention (calling his name etc) usually go ignored.
- Maybe good, maybe bad news: He has an exceptional memory. At 15 months he could pick out every letter in the alphabet. A month later he could say several of them by name. He also has good spatial reasoning and can solve puzzles meant for much older children. I've spent a lot of time with him and he definitely gives the impression of being very bright and alert, if not always totally "there."
FWIW, I'm personally in favor of going ahead with some evaluations and speech therapy (what could it hurt?), while I think she is leaning against it. But I'm willing to be proven wrong and I have heard enough stories of misdiagnosis that I wanted to see what wisdom the hivemind could offer. Thanks!
I did not learn to talk until I was about four, and that was after a year and a half of special ed, which came after having my hearing and IQ tested. My baby book says I learned to say ball, mom and dad, and then nothing else except babble until I entered special ed. The IQ test identified me as gifted, and the teachers took that into account. After I learned to talk, I got mainstreamed, and stayed in mainstream classrooms for my entire K-12 career. It is just an anecdote, but the early intervention system can help your nephew get over his speech difficulties, and you could pull him out if you worry about it stifling his giftedness.
posted by Elementary Penguin at 5:21 PM on August 7, 2014 [7 favorites]
posted by Elementary Penguin at 5:21 PM on August 7, 2014 [7 favorites]
I wanted to add that my delayed speech had an impact on my socialization skills that took a long time to overcome, so your nephew is going to want to learn to communicate ASAP, in spoken language or sign.
posted by Elementary Penguin at 5:23 PM on August 7, 2014 [9 favorites]
posted by Elementary Penguin at 5:23 PM on August 7, 2014 [9 favorites]
First gifted and special needs/developmental problems often go together. His pattern of strengths and weakness could be (could - I have no idea if they are) seen in a child on the autism spectrum.
If he does have a problem, early intervention can make a huge difference. There are many kids on the high functioning end that just need some aggressive early help and by the time they are in kindergarden they are doing just great.
I would support the idea of getting a full assessment and see what is recommended before making a final decision about what to do.
posted by metahawk at 5:24 PM on August 7, 2014 [15 favorites]
If he does have a problem, early intervention can make a huge difference. There are many kids on the high functioning end that just need some aggressive early help and by the time they are in kindergarden they are doing just great.
I would support the idea of getting a full assessment and see what is recommended before making a final decision about what to do.
posted by metahawk at 5:24 PM on August 7, 2014 [15 favorites]
I had a long-term sub gig in a public preschool special education classroom in grad school. I LOVED the experience: the students, their families, the teachers, the TAs, and more. I also learned that nearly all preschoolers who qualify are simply labelled as having "developmental delays" rather than anything specific with the hope/possibility that the challenges may be compensated for by the time the child reaches kindergarten. (The program's also about helping the parents best foster their children's independence as professional advice can be extra valuable in this scenarios.) I would be happy to send my [future] child to that program, which is nice as I shared your mom's hesitation beforehand. I, too, was misdiagnosed by people in the school system and my family had to fight it: I graduated a super independent honors student and went on to more academic and creative success but was grateful for the reading recovery provided to me from first to third grade. It's totally possible to have learning disabilities AND be gifted, of course!!
Now I'm a mainstream teacher who regularly works with students with special needs. I feel good about the special education services provided in general; my only complaint would not be that people are given too much support or the wrong support but rather I wish more people would quality for the help. I would recommend your nephew at least get tested for eligibility, and then take it from there. Your sister has a lot of power in the situation: she can always choose to reject the services or limit them, should she so please or opt for retesting. You could even attend the meetings discussing your nephew's plan if she wants back up. Early speech intervention, for example, can work wonders and it's generally not something people regret having done.
I can also say that, should your nephew be on the autism spectrum, which I sense your family might be pondering, early help could really be beneficial in his long-term success. I agree with your mother that the old approach to teaching students with autism was awful but things have really changed in the past, say, 30 years (thank goodness!!) I've found that many high functioning students on the autism spectrum blossom into truly awesome adults who have retained their strengths, like creativity, while also gaining social skills. I've had some conversations with such students who themselves have mentioned how they had a rough time growing up but feel good about where they have gotten and who they are, aware of their challenges but also their talents. However, this is all very far in advance: I'm talking about 18 year olds here, not toddlers. Either way, it sounds like testing and potential intervention would really have its pluses. I wish you luck: this is a tough situation but you and your family sound very caring and conscientious.
posted by smorgasbord at 5:30 PM on August 7, 2014 [6 favorites]
Now I'm a mainstream teacher who regularly works with students with special needs. I feel good about the special education services provided in general; my only complaint would not be that people are given too much support or the wrong support but rather I wish more people would quality for the help. I would recommend your nephew at least get tested for eligibility, and then take it from there. Your sister has a lot of power in the situation: she can always choose to reject the services or limit them, should she so please or opt for retesting. You could even attend the meetings discussing your nephew's plan if she wants back up. Early speech intervention, for example, can work wonders and it's generally not something people regret having done.
I can also say that, should your nephew be on the autism spectrum, which I sense your family might be pondering, early help could really be beneficial in his long-term success. I agree with your mother that the old approach to teaching students with autism was awful but things have really changed in the past, say, 30 years (thank goodness!!) I've found that many high functioning students on the autism spectrum blossom into truly awesome adults who have retained their strengths, like creativity, while also gaining social skills. I've had some conversations with such students who themselves have mentioned how they had a rough time growing up but feel good about where they have gotten and who they are, aware of their challenges but also their talents. However, this is all very far in advance: I'm talking about 18 year olds here, not toddlers. Either way, it sounds like testing and potential intervention would really have its pluses. I wish you luck: this is a tough situation but you and your family sound very caring and conscientious.
posted by smorgasbord at 5:30 PM on August 7, 2014 [6 favorites]
From the Gifted Development Center in Colorado:
Critical Issues in the Identification of Gifted Students With Co-Existing Disabilities
Ideally, you want someone familiar with "twice exceptional" kids. Gifted and learning disabled (or otherwise disabled) kids can be hard to properly assess.
I am kind of out of the loop and no longer have any idea of what is currently available but there are people qualified to assess a child with both giftedness and special ed needs. And that can help avert the kinds of problems you have been warned about.
Early intervention can make a huge difference. If you go to the right professional, the odds of misdiagnosis go down.
posted by Michele in California at 5:31 PM on August 7, 2014 [5 favorites]
Critical Issues in the Identification of Gifted Students With Co-Existing Disabilities
Ideally, you want someone familiar with "twice exceptional" kids. Gifted and learning disabled (or otherwise disabled) kids can be hard to properly assess.
I am kind of out of the loop and no longer have any idea of what is currently available but there are people qualified to assess a child with both giftedness and special ed needs. And that can help avert the kinds of problems you have been warned about.
Early intervention can make a huge difference. If you go to the right professional, the odds of misdiagnosis go down.
posted by Michele in California at 5:31 PM on August 7, 2014 [5 favorites]
I'm a speech pathologist grad student. Early intervention is when you can really stronly affect communication skills and once that window when the brain is so elastic in its learning capabilities closes, you can never get it back. Not that he wouldn't make improvements but I've seen firsthand how kids with moderate communication deficits who had early intervention services have been able to not need services anymore or not need them to the same degree.
And yes, definitely test the hearing because a mild loss in children can absolutely stunt their communication skills when it may be just an annoyance to an adult.
Please get him the services he needs. At 20 months you can still see a huge improvement if he has services. You can be a genius and still have a communication disorder. I have asperger's and to have that diagnosis you need at least to have an average IQ so throw out the idea that a speech delay means X or Y.
posted by Aranquis at 5:54 PM on August 7, 2014 [16 favorites]
And yes, definitely test the hearing because a mild loss in children can absolutely stunt their communication skills when it may be just an annoyance to an adult.
Please get him the services he needs. At 20 months you can still see a huge improvement if he has services. You can be a genius and still have a communication disorder. I have asperger's and to have that diagnosis you need at least to have an average IQ so throw out the idea that a speech delay means X or Y.
posted by Aranquis at 5:54 PM on August 7, 2014 [16 favorites]
I was this kid. Here's what you probably don't want to hear: I'm Autistic. Obviously what I'll say in this comment is only anecdata and it's worth also listening to specialists. But I think this is really important to say: it is ok if your nephew is autistic. Getting along in neurotypical society can be bumpy, but it's part of life. It's not insurmountable. You seem pretty chill about the possibility, but sometimes once the "specter" (it's not a specter) of autism is raised, people freak out. It's ok. Autistic people are also people.
Partly because my mother is also autistic, I was never assessed as a child (as far as she was concerned, everything was normal!). As a result, I don't know much about most early interventions. (I also have strong feelings about autistic kids being made to adapt to neurotypical standards, so most of what I do know gives me hives.)
Here's what worked in my case: Montessori schooling from 18 months through 5th grade. Enough structure to keep me soothed, enough flexibility that my advanced skills could be accounted for without constraining me or the other kids.
The only thing I would consider a major red flag is if someone suggests ABA therapy to you. Most Autistic self-advocates are fiercely against it.
posted by dorque at 5:59 PM on August 7, 2014 [20 favorites]
Partly because my mother is also autistic, I was never assessed as a child (as far as she was concerned, everything was normal!). As a result, I don't know much about most early interventions. (I also have strong feelings about autistic kids being made to adapt to neurotypical standards, so most of what I do know gives me hives.)
Here's what worked in my case: Montessori schooling from 18 months through 5th grade. Enough structure to keep me soothed, enough flexibility that my advanced skills could be accounted for without constraining me or the other kids.
The only thing I would consider a major red flag is if someone suggests ABA therapy to you. Most Autistic self-advocates are fiercely against it.
posted by dorque at 5:59 PM on August 7, 2014 [20 favorites]
It would be really fucking terrible to be a gifted child locked in your own mind with no way to communicate beyond rudimentary grunting and gestures and to have that horrible situation persist entirely because your parents were afraid of harming your giftedness.
If his only delay is speech and he starts speaking quickly after working with a speech therapist, it's likely he'll be "graduated" from special education the day he turns three and no longer qualifies for EI. If his only delay is speech and it takes past his third birthday, I would bet a million dollars right now that he will be exited from special education at his three-year reevaluation at age 6, if not before.
If speech isn't his only delay, holding off on the eval is only making things worse, not better. His giftedness will not mean a single thing if he has a disability that masks it. That's what his parents are risking. Say it nicer than I did, probably, but that's the breakdown.
posted by Snarl Furillo at 6:02 PM on August 7, 2014 [21 favorites]
If his only delay is speech and he starts speaking quickly after working with a speech therapist, it's likely he'll be "graduated" from special education the day he turns three and no longer qualifies for EI. If his only delay is speech and it takes past his third birthday, I would bet a million dollars right now that he will be exited from special education at his three-year reevaluation at age 6, if not before.
If speech isn't his only delay, holding off on the eval is only making things worse, not better. His giftedness will not mean a single thing if he has a disability that masks it. That's what his parents are risking. Say it nicer than I did, probably, but that's the breakdown.
posted by Snarl Furillo at 6:02 PM on August 7, 2014 [21 favorites]
EARLY INTERVENE. It makes a world of difference. (With speech delays, early intervention can ameliorate something like 80% of them into non-existence by the time the child is 7 or something.) Diagnoses are no longer a red flag that follows a student and consigns him to low-track classes and so on; special ed students take the SAME TESTS as other students now so giftedness will be identified. (In a lot of wealthy suburban areas, there's actually a concern because some parents actively seek special ed designations for their gifted students in order to get them even an a little bit more of a leg up!)
My older son, who is now five, has some developmental delays in some areas (speech, fine motor, some socialization stuff), but is extremely gifted, to the point that he "broke the test" for four-year-olds, and his pre-K teacher was talking to us about how we were going to deal with his giftedness in two or three years down the road depending on how the developmental things come along. His speech issue has been basically entirely fixed with two years of speech therapy.
The best thing is, it is totally common now for kids who have IEPs or 504s to also receive gifted services, and schools are totally ready to provide that. My son's school was totally relaxed about the fact that he was receiving special ed services AND was the highest-achieving student in the classroom, and his teacher and therapists were able to do BOTH gifted AND special ed things at the same time. Like some of his fine-motor occupational therapy was pretty advanced science experiments that normally kids wouldn't do until second grade. Or his speech therapy would also build on expanding his big vocabulary and his high reading level. That kind of thing.
posted by Eyebrows McGee at 6:09 PM on August 7, 2014 [10 favorites]
My older son, who is now five, has some developmental delays in some areas (speech, fine motor, some socialization stuff), but is extremely gifted, to the point that he "broke the test" for four-year-olds, and his pre-K teacher was talking to us about how we were going to deal with his giftedness in two or three years down the road depending on how the developmental things come along. His speech issue has been basically entirely fixed with two years of speech therapy.
The best thing is, it is totally common now for kids who have IEPs or 504s to also receive gifted services, and schools are totally ready to provide that. My son's school was totally relaxed about the fact that he was receiving special ed services AND was the highest-achieving student in the classroom, and his teacher and therapists were able to do BOTH gifted AND special ed things at the same time. Like some of his fine-motor occupational therapy was pretty advanced science experiments that normally kids wouldn't do until second grade. Or his speech therapy would also build on expanding his big vocabulary and his high reading level. That kind of thing.
posted by Eyebrows McGee at 6:09 PM on August 7, 2014 [10 favorites]
More information never hurts. And, if he does have some hearing problems, the earlier a proper diagnostic can be made, the better. Sorry to be blunt, but your mother who is "versed in gifted education" sounds like the perfect example of "a little knowledge is a dangerous thing" by her one-sided intransigence. Anyone that knows enough about any topic would definitely NOT be opposed to getting more information/proper diagnostic. Your mother fears a misdiagnosis ... a missing diagnosis is an example of a misdiagnosis.
posted by aroberge at 6:09 PM on August 7, 2014 [5 favorites]
posted by aroberge at 6:09 PM on August 7, 2014 [5 favorites]
Mom of twice exceptional kid (gifted/autism spectrum) here. Please use whatever Early Intervention resources are available. The more information you have, the better. It won't take away his giftedness if you get an autism (or whatever) diagnosis.
posted by Daily Alice at 6:21 PM on August 7, 2014 [1 favorite]
posted by Daily Alice at 6:21 PM on August 7, 2014 [1 favorite]
I think he definitely should get help with the language delay. Not least because of this:
It would be really fucking terrible to be a gifted child locked in your own mind with no way to communicate beyond rudimentary grunting and gestures and to have that horrible situation persist entirely because your parents were afraid of harming your giftedness.
...which -- even in a best case scenario, in which literally nothing else is going on except that he's non-verbal -- could still actually lead to immense frustration for him, and therefore to long-lasting behavior problems and maladaptive coping mechanisms, as well as a language deficit that will only be difficult for him to overcome as he gets older.
I'm also not sure what social skills he's having trouble with? If it's mostly that he's not responding to his name or using other people's names, that actually sounds to me like more of a hearing or auditory processing disorder than anything else. The not liking to be bound or touched actually sounds to me like it's likely to be hearing-related, too -- if he communicates mostly by gesturing and takes in information mostly visually, of course he wants to have his body free for gesturing and doesn't want his vision blocked. And I'm saying that as someone who hates to be touched for reasons that have nothing to do with hearing or being nonverbal. I'm not saying he *doesn't* have social deficits (I've never met him, after all!), but I think his behavior requires more investigation, because these aren't *necessarily* (or maybe even most likely, imo) *social* problems from how you describe them. And not that the prospect of him having hearing loss or being HOH is better/worse than the prospect of him having ASD, but just putting it out there that there are a bunch of possibilities for what is going on, and denying him treatment or getting the opinions of professions really isn't going to help in any case.
No problem is going to magically disappear just because you ignore it, so I don't really see the upside to ignoring it? It's also not a good idea to teach him to be ashamed of being anything but "perfect," meaning anything but being gifted and not-autistic and having perfect hearing, etc etc etc, regardless of whether he's autistic or HOH or not. I mean, regardless, he's not going to be perfect in EVERY way, so it's always a good idea to make sure the family is OK with that and he's OK with that and he has no reason to be afraid of shaming the family/himself by being imperfect.
If you're worried about him having ASD in particular, that's also maybe less likely than you're worried it is. Kids with what used to be called Asperger's (not sure of the term now, aside from the ASD catch-all?) don't usually have language delays, and often have very strong verbal skills. Though grain of salt and all -- I'm not a professional in the field (probably obvious!), just someone who has worked with kids with special needs.
posted by rue72 at 6:28 PM on August 7, 2014 [1 favorite]
It would be really fucking terrible to be a gifted child locked in your own mind with no way to communicate beyond rudimentary grunting and gestures and to have that horrible situation persist entirely because your parents were afraid of harming your giftedness.
...which -- even in a best case scenario, in which literally nothing else is going on except that he's non-verbal -- could still actually lead to immense frustration for him, and therefore to long-lasting behavior problems and maladaptive coping mechanisms, as well as a language deficit that will only be difficult for him to overcome as he gets older.
I'm also not sure what social skills he's having trouble with? If it's mostly that he's not responding to his name or using other people's names, that actually sounds to me like more of a hearing or auditory processing disorder than anything else. The not liking to be bound or touched actually sounds to me like it's likely to be hearing-related, too -- if he communicates mostly by gesturing and takes in information mostly visually, of course he wants to have his body free for gesturing and doesn't want his vision blocked. And I'm saying that as someone who hates to be touched for reasons that have nothing to do with hearing or being nonverbal. I'm not saying he *doesn't* have social deficits (I've never met him, after all!), but I think his behavior requires more investigation, because these aren't *necessarily* (or maybe even most likely, imo) *social* problems from how you describe them. And not that the prospect of him having hearing loss or being HOH is better/worse than the prospect of him having ASD, but just putting it out there that there are a bunch of possibilities for what is going on, and denying him treatment or getting the opinions of professions really isn't going to help in any case.
No problem is going to magically disappear just because you ignore it, so I don't really see the upside to ignoring it? It's also not a good idea to teach him to be ashamed of being anything but "perfect," meaning anything but being gifted and not-autistic and having perfect hearing, etc etc etc, regardless of whether he's autistic or HOH or not. I mean, regardless, he's not going to be perfect in EVERY way, so it's always a good idea to make sure the family is OK with that and he's OK with that and he has no reason to be afraid of shaming the family/himself by being imperfect.
If you're worried about him having ASD in particular, that's also maybe less likely than you're worried it is. Kids with what used to be called Asperger's (not sure of the term now, aside from the ASD catch-all?) don't usually have language delays, and often have very strong verbal skills. Though grain of salt and all -- I'm not a professional in the field (probably obvious!), just someone who has worked with kids with special needs.
posted by rue72 at 6:28 PM on August 7, 2014 [1 favorite]
Actually, yeah, having thought about it some more, I agree with many commenters who are suggesting you get his hearing tested, but specifically find out if there's a way to test children this young for auditory processing disorders. My hearing is "officially" fine if they do the thing where they put a headset on you and make you listen to beeps, but unless I'm specifically paying attention to it, human speech doesn't generally register as meaningful noises.
posted by dorque at 6:32 PM on August 7, 2014
posted by dorque at 6:32 PM on August 7, 2014
Dittoing EI. I have two children, the older one of whom is twice-exceptional (ADHD/gifted) and the younger one had speech therapy through EI and is also gifted. My son graduated from speech therapy at age 3 and in no way had his innate abilities compromised by the intervention process. It was absolutely the right thing to put him in, because he was very obviously frustrated by his inability to express himself, and once he had the skills, there was just an avalanche of words and thoughts and sentences and on and on coming out of him. It was like the faucet was just stuck a bit, and the speech therapy loosened it.
Absolutely get him evaluated. It would hurt nothing and possibly make all the difference in the world for him.
posted by altopower at 6:33 PM on August 7, 2014 [3 favorites]
Absolutely get him evaluated. It would hurt nothing and possibly make all the difference in the world for him.
posted by altopower at 6:33 PM on August 7, 2014 [3 favorites]
Ear doctor. Stat. 9 times out of 10 this is easily fixed fluid in the ear. (My father is an ENT doctor..this is a huge part of his practice)
posted by sexyrobot at 6:48 PM on August 7, 2014 [2 favorites]
posted by sexyrobot at 6:48 PM on August 7, 2014 [2 favorites]
Anecdata, but sounds autistic to me. I have an autistic child. He was reciting the alphabet backwards at age 2. Then sudden regression. This is a pretty common pattern.
If the child is autistic, early intervention can only help. [edit] Although it might be too early for a proper diagnosis, starting now will help get him on the radar with social services.
posted by natteringnabob at 6:52 PM on August 7, 2014
If the child is autistic, early intervention can only help. [edit] Although it might be too early for a proper diagnosis, starting now will help get him on the radar with social services.
posted by natteringnabob at 6:52 PM on August 7, 2014
It would be really fucking terrible to be a gifted child locked in your own mind with no way to communicate beyond rudimentary grunting and gestures and to have that horrible situation persist entirely because your parents were afraid of harming your giftedness.
Thank you to the commenter who MeMailed me and pointed out that this was an incorrect and harmful thing to say. I should not have written it. There are many people who are non-verbal or non-speaking and their lives are not horrible or bad. I apologize to everyone I hurt by equating non-verbal to "horrible."
Even if your family decides not to use early intervention services, I definitely still recommend having your nephew assessed. More information is always better. Your nephew might be a non-verbal person, and if he is, there are SOOOO many communication methods he could tap into (and he can use them even if he ends up learning to speak later/while he's doing speech therapy)- signing, picture boards, speech boards and typing as he gets older, etc. Why not tap into those now, while you figure out what's going in?
posted by Snarl Furillo at 7:05 PM on August 7, 2014 [4 favorites]
Thank you to the commenter who MeMailed me and pointed out that this was an incorrect and harmful thing to say. I should not have written it. There are many people who are non-verbal or non-speaking and their lives are not horrible or bad. I apologize to everyone I hurt by equating non-verbal to "horrible."
Even if your family decides not to use early intervention services, I definitely still recommend having your nephew assessed. More information is always better. Your nephew might be a non-verbal person, and if he is, there are SOOOO many communication methods he could tap into (and he can use them even if he ends up learning to speak later/while he's doing speech therapy)- signing, picture boards, speech boards and typing as he gets older, etc. Why not tap into those now, while you figure out what's going in?
posted by Snarl Furillo at 7:05 PM on August 7, 2014 [4 favorites]
I also meant to say two more things --
First, grandmothers often worry about the child "getting a label for life" which was a lot more common 20 or 30 years ago, and even more common 20 or 30 years before that. A lot has changed -- having a special ed diagnosis can't impact your health insurance any more, for example, and schools are much better at providing special ed services in mainstream classes and getting special ed students into gifted and AP and fine arts classes and that sort of thing.
Second, hey OP, please feel free to memail me and I'm happy to e-mail with your sister and talk to her about it -- it can be really isolating to have a child with the dual challenges of developmental issues and giftedness, and navigating the system can be overwhelming. I know a lot about U.S. special ed stuff and fighting school bureaucracies, and I'm happy to just provide support! :)
posted by Eyebrows McGee at 7:06 PM on August 7, 2014 [7 favorites]
First, grandmothers often worry about the child "getting a label for life" which was a lot more common 20 or 30 years ago, and even more common 20 or 30 years before that. A lot has changed -- having a special ed diagnosis can't impact your health insurance any more, for example, and schools are much better at providing special ed services in mainstream classes and getting special ed students into gifted and AP and fine arts classes and that sort of thing.
Second, hey OP, please feel free to memail me and I'm happy to e-mail with your sister and talk to her about it -- it can be really isolating to have a child with the dual challenges of developmental issues and giftedness, and navigating the system can be overwhelming. I know a lot about U.S. special ed stuff and fighting school bureaucracies, and I'm happy to just provide support! :)
posted by Eyebrows McGee at 7:06 PM on August 7, 2014 [7 favorites]
My older son is "twice exceptional" (2e) - and I wish we'd gotten him intervention earlier. He has gone through testing with an educational psychologist, as well as PT, OT, and speech evaluations, but only in the last year. It wasn't that we didn't see that he had challenges that we ended up waiting so long (he will be 8 in the fall), it's because whenever we asked people who had experience we trusted about our concerns, we were told that he'd "outgrow" it, and that since he was so bright, it wasn't a big deal.
Kindergarten revealed some delays, but the beginning of first grade is when it really hit that no matter how bright he is, he needed interventions. We did the educational psychologist testing, and while he was scored 3-4 standard deviations above the average in some areas, there was also evidence that he has problems with attention (ADHD combined type) and processing speed that impact his ability to exercise that giftedness. And his speech was not improving. And watching him with other kids his age made it clear that he wasn't going to catch up physically, not on his own. So we went through all the other available evaluations. And now he has three different services - OT, PT, and speech - that we have to fit into school and activities, and we have to play catch up. All the professionals say that with therapy, the likelihood that he will come up to speed, so to speak, in all areas is quite good. But he is at a disadvantage that kids with the same giftedness and challenges who got intervention earlier do not face.
This is my long-windeded, very personal way of saying please, please urge your sister to have your nephew assessed. Assessment will not hurt him. Not assessing him as early as possible could very well hurt him in the short and long term. Ask your sister if she'd rather get started early, and let him be well positioned to start school with all the tools he'll need, or do what I'm doing and have to negotiate the whole system while he's struggling in school. She's not doing him any favors by not taking the opportunity now.
posted by Lulu's Pink Converse at 7:48 PM on August 7, 2014 [4 favorites]
Kindergarten revealed some delays, but the beginning of first grade is when it really hit that no matter how bright he is, he needed interventions. We did the educational psychologist testing, and while he was scored 3-4 standard deviations above the average in some areas, there was also evidence that he has problems with attention (ADHD combined type) and processing speed that impact his ability to exercise that giftedness. And his speech was not improving. And watching him with other kids his age made it clear that he wasn't going to catch up physically, not on his own. So we went through all the other available evaluations. And now he has three different services - OT, PT, and speech - that we have to fit into school and activities, and we have to play catch up. All the professionals say that with therapy, the likelihood that he will come up to speed, so to speak, in all areas is quite good. But he is at a disadvantage that kids with the same giftedness and challenges who got intervention earlier do not face.
This is my long-windeded, very personal way of saying please, please urge your sister to have your nephew assessed. Assessment will not hurt him. Not assessing him as early as possible could very well hurt him in the short and long term. Ask your sister if she'd rather get started early, and let him be well positioned to start school with all the tools he'll need, or do what I'm doing and have to negotiate the whole system while he's struggling in school. She's not doing him any favors by not taking the opportunity now.
posted by Lulu's Pink Converse at 7:48 PM on August 7, 2014 [4 favorites]
Echoing the "label for life" concern.
My autistic child needs to be reassessed every 5 years though the pubic school (which she is doing awesome in thanks to early intervention) and through our family doctor to qualify for her diagnosis and her disability status.
If anything, the early invention supported her gifts (high intelligence and vocally and artistically gifted), the school systems work together with parents to develop an IPP ( Individualized Program Plan) where you ultimately chose what you want them to work on with your child.
Also, the window for which the basic building blocks of language to be learned mostly closes around 7 years of age. You want as much language/speech therapy in there as possible during those early years. Communication makes everyone's quality of life improve.
posted by tenaciousmoon at 7:50 PM on August 7, 2014
My autistic child needs to be reassessed every 5 years though the pubic school (which she is doing awesome in thanks to early intervention) and through our family doctor to qualify for her diagnosis and her disability status.
If anything, the early invention supported her gifts (high intelligence and vocally and artistically gifted), the school systems work together with parents to develop an IPP ( Individualized Program Plan) where you ultimately chose what you want them to work on with your child.
Also, the window for which the basic building blocks of language to be learned mostly closes around 7 years of age. You want as much language/speech therapy in there as possible during those early years. Communication makes everyone's quality of life improve.
posted by tenaciousmoon at 7:50 PM on August 7, 2014
My kiddo was neurotypical but had speech and motor delays due to muscular issues, that also made him slow to talk/needing some accomodation on physical activities. It was all in his school paperwork/we were up front with his teachers, but had no bad effect on how he was treated. Things really are better now. Most teachers and schools are much better educated about disabilities, delays and other issues. I would hope his pediatrician has already ruled out hearing/physical issues that could cause speech delays, but if he hasn't, then that would be the obvious first thing to get tested.
posted by emjaybee at 7:56 PM on August 7, 2014
posted by emjaybee at 7:56 PM on August 7, 2014
Sorry, I meant to elaborate,
Echoing the "label for life" concern: this is no longer a concern as it was in the past. A bigger concern presently seems to be maintaining your child's diagnosis to ensure continuing access to services.
posted by tenaciousmoon at 7:57 PM on August 7, 2014 [1 favorite]
Echoing the "label for life" concern: this is no longer a concern as it was in the past. A bigger concern presently seems to be maintaining your child's diagnosis to ensure continuing access to services.
posted by tenaciousmoon at 7:57 PM on August 7, 2014 [1 favorite]
My first thought was a hearing test, too, although I assume the pediatrician has done that.
I would be inclined to listen to the pediatrician and pursue every resource available to your nephew. What does it mean that your mother is "versed in gifted education?" Is she a teacher, has an MS in Ed, PhD specializing in gifted ed? Or she has read the books/articles/blogs/research and/or has experience in the system with her own kids, who are now parents? How current is her information & experience? Things have changed a lot in education & special services. The "system" grandmother seems leery of is designed to help kids succeed by getting the help they need so they are ready for school, not to label them forever. Your sister will need to be vigilant & a strong advocate for her son through the whole process, but assessment with possible intervention is valuable information that the family can use to benefit your nephew.
As a parent, I am more concerned about the lack of communication, reluctant interactions with other people, not engaging or responding when addressed--all of which are fundamental for school success--than any early indications of giftedness. My kid could do all those gifted things listed and hold a real conversation in full sentences with an unfamiliar adult at nine months old--she had an amazing vocabulary and memory. She eventually--in middle school--had a diagnosis of ADD. We & her teachers overlooked a lot because she was so verbally & socially gifted. In MS & early HS, she fought intervention because of the perceived stigma (some of which was perpetuated by adults) until an academic crisis triggered her cooperation. She might have developed more of her gifts (& certainly gotten better grades!) if she had received the diagnosis earlier and received intervention before she was aware it made her "different." We'll never know and I am sometimes sad about lost opportunities because of the lack of early intervention. (Not too sad; she is now a terrific emerging adult.) Obviously a different situation than your nephew, but it is a tale of regret for not pursuing help earlier when it would have been easier for her.
Note that there are private organizations for assessment, evaluation, & intervention services if she is worried about the public school system and his future. In our case, we used a private non-profit specializing in learning differences because the wait for school-age assessment in our large metro school district was long--another reason to get the process started now for your nephew; pre-school assessment seems to happen more quickly in that district.
posted by Nosey Mrs. Rat at 8:03 PM on August 7, 2014
I would be inclined to listen to the pediatrician and pursue every resource available to your nephew. What does it mean that your mother is "versed in gifted education?" Is she a teacher, has an MS in Ed, PhD specializing in gifted ed? Or she has read the books/articles/blogs/research and/or has experience in the system with her own kids, who are now parents? How current is her information & experience? Things have changed a lot in education & special services. The "system" grandmother seems leery of is designed to help kids succeed by getting the help they need so they are ready for school, not to label them forever. Your sister will need to be vigilant & a strong advocate for her son through the whole process, but assessment with possible intervention is valuable information that the family can use to benefit your nephew.
As a parent, I am more concerned about the lack of communication, reluctant interactions with other people, not engaging or responding when addressed--all of which are fundamental for school success--than any early indications of giftedness. My kid could do all those gifted things listed and hold a real conversation in full sentences with an unfamiliar adult at nine months old--she had an amazing vocabulary and memory. She eventually--in middle school--had a diagnosis of ADD. We & her teachers overlooked a lot because she was so verbally & socially gifted. In MS & early HS, she fought intervention because of the perceived stigma (some of which was perpetuated by adults) until an academic crisis triggered her cooperation. She might have developed more of her gifts (& certainly gotten better grades!) if she had received the diagnosis earlier and received intervention before she was aware it made her "different." We'll never know and I am sometimes sad about lost opportunities because of the lack of early intervention. (Not too sad; she is now a terrific emerging adult.) Obviously a different situation than your nephew, but it is a tale of regret for not pursuing help earlier when it would have been easier for her.
Note that there are private organizations for assessment, evaluation, & intervention services if she is worried about the public school system and his future. In our case, we used a private non-profit specializing in learning differences because the wait for school-age assessment in our large metro school district was long--another reason to get the process started now for your nephew; pre-school assessment seems to happen more quickly in that district.
posted by Nosey Mrs. Rat at 8:03 PM on August 7, 2014
The strategy a family I know who were worried about the stigma of a misdiagnosis was to first go through private doctors to do the testing and arrange for private intervention. Expensive, but they were able to mainstream their child who likely has mild autism, which has been emotionally important to them and logistically helpful - the kid is in a school that does not have additional resources and the schools for kids with autism here are for moderate to severe. The testing part was the cheapest, it's the ongoing intervention that costs a lot.
Have you tried Baby Signing Time by Rachel Coleman? You can preview the songs on youtube and her website and see if your nephew responds to them.
I didn't speak until I was past two. Thomas Sewell has an older book on this - there's a pool of kids who are bright, not autistic and just don't speak until later. It fit me to a tee, reading it, but my fourth kid who spoke late turned out to have generalized speech delay due to anxiety, repeated ear infections and multiple language exposure. Same outcome, different causes.
Delaying a diagnosis vs fighting a misdiagnosis - the risk is way higher on a delayed diagnosis. Your sister has one kid she knows very well, while the people doing the testing will have seen many many children but at a much briefer exposure. They'll see different viewpoints, sort of "the forest for the trees", both of which can be accurate.
And really, her major issue is far more likely to be pushing for more help, not turning down unwanted help. The resources are always stretched thin.
Is she afraid that he's autistic? That has been a big delay for several kids I know in getting help, their parents' fear of acknowledging there really was a problem. It's hard emotionally, especially with a lifelong diagnosis.
posted by viggorlijah at 8:44 PM on August 7, 2014
Have you tried Baby Signing Time by Rachel Coleman? You can preview the songs on youtube and her website and see if your nephew responds to them.
I didn't speak until I was past two. Thomas Sewell has an older book on this - there's a pool of kids who are bright, not autistic and just don't speak until later. It fit me to a tee, reading it, but my fourth kid who spoke late turned out to have generalized speech delay due to anxiety, repeated ear infections and multiple language exposure. Same outcome, different causes.
Delaying a diagnosis vs fighting a misdiagnosis - the risk is way higher on a delayed diagnosis. Your sister has one kid she knows very well, while the people doing the testing will have seen many many children but at a much briefer exposure. They'll see different viewpoints, sort of "the forest for the trees", both of which can be accurate.
And really, her major issue is far more likely to be pushing for more help, not turning down unwanted help. The resources are always stretched thin.
Is she afraid that he's autistic? That has been a big delay for several kids I know in getting help, their parents' fear of acknowledging there really was a problem. It's hard emotionally, especially with a lifelong diagnosis.
posted by viggorlijah at 8:44 PM on August 7, 2014
My son hardly spoke untill he was almost 4 years old. It had us really worried. Wouldn't even say his name. He's fifteen now and boy, did he compensate for those four years of grunts and jibberish. He became an eloquent speaker and has no problem whatsoever learning different languages.
posted by ouke at 9:10 PM on August 7, 2014
posted by ouke at 9:10 PM on August 7, 2014
FWIW, economist Thomas Sowell wrote an entire book about the phenomenon of bright children who talk late, based on his experiences with his own his son and 57 other members of a support group he started: Late-Talking Children. The blurb for the book specifically mentions mostly male gender, and great memory and analytical skills. (Spoiler: all the kids turned out to be fine, it's apparently just a developmental thing with some types of intelligent children).
Not saying your nephew necessarily would fit the pattern he's describing, but it might be an interesting and/or comforting read for the parents.
posted by Bardolph at 3:48 AM on August 8, 2014
Not saying your nephew necessarily would fit the pattern he's describing, but it might be an interesting and/or comforting read for the parents.
posted by Bardolph at 3:48 AM on August 8, 2014
Please, get an early intervention assessment and here's why: I'm a special ed teacher and that intensive testing can give everyone a very clear picture of the entire child's profile; their strengths, where they need a little support, where they need significant support.
We don't get a kid's report that has Autism has the primary diagnosis, whip open the Autism Book, and then go Steps 1 through 43 to help the kid.
Good special education teams work hard to provide kids the individual education they require to succeed, hence the creation of an IEP.
And something it seems most people don't know: a child can be assessed, an IEP written and services considered, and a parent can reject the IEP.
You don't have to agree to anything. The kid can still get no support if that's what the parents want. It's really a collaborative TEAM process.
An assessment doesn't lock a kid into a label or years of special education, but it can provide a useful roadmap about the kid's level of functioning.
Two las things: please get his hearing checked and if they decide to have the kid assessed, get it done by someone highly recommended by local parents. I've seen terrible assessments and excellent ones, and it's based on the same testing. But I've seen kids completely shortchanged because of a hack PhD student.
posted by kinetic at 4:00 AM on August 8, 2014 [3 favorites]
We don't get a kid's report that has Autism has the primary diagnosis, whip open the Autism Book, and then go Steps 1 through 43 to help the kid.
Good special education teams work hard to provide kids the individual education they require to succeed, hence the creation of an IEP.
And something it seems most people don't know: a child can be assessed, an IEP written and services considered, and a parent can reject the IEP.
You don't have to agree to anything. The kid can still get no support if that's what the parents want. It's really a collaborative TEAM process.
An assessment doesn't lock a kid into a label or years of special education, but it can provide a useful roadmap about the kid's level of functioning.
Two las things: please get his hearing checked and if they decide to have the kid assessed, get it done by someone highly recommended by local parents. I've seen terrible assessments and excellent ones, and it's based on the same testing. But I've seen kids completely shortchanged because of a hack PhD student.
posted by kinetic at 4:00 AM on August 8, 2014 [3 favorites]
My kid had similar issues as a toddler. He was tested for many things and turns out that he has mild hearing loss in the higher frequencies. He actually passed many of the school district tests (including the hearing), but we had him tested on our own. After his diagnosis from an audiologist and ENT, we got him hearing aids and he enrolled in preschool speech therapy. This early intervention meant that he was able to start (and continue) his education with no special IEP or intervention whatsoever. Now he's an honor student in high school.
Why can't your nephew get tested separate from school? I don't think that you are obligated to share his diagnosis with the school system.
Bottom line, don't wait. You have everything to gain and nothing to lose.
posted by jraz at 5:08 AM on August 8, 2014
Why can't your nephew get tested separate from school? I don't think that you are obligated to share his diagnosis with the school system.
Bottom line, don't wait. You have everything to gain and nothing to lose.
posted by jraz at 5:08 AM on August 8, 2014
So you mostly just described my littlest guy (who is due for his EI appointment in a few minutes). He had a bit more eye contact than your nephew, but same complete lack of babbling, no real words around 20 months, no mirroring of things we did, etc. We had him tested for early intervention (after a hearing test, which is standard) and they came across (even though he was being shy and not really interacting with them much at all) with a clear label of just delayed expressive (ie. actual talking) speech. He was fine as far as everything else goes for his age range (which, honestly, was good to hear). So for the past couple months he's been getting a once a week session with an EI person at our home and really it is just playing that has a bit more focus on getting him to talk. And it has been wildly successful. Every case is different, but having someone who has special training for how to best bring out talking abilities really helps.
I had a friend whose kid had all the issues your nephew does, who did the early intervention testing, found out he had severe hearing difficulties, which were not obvious at all. Even after fixing that, he tested as having some autism like symptoms. He got extra help with everything and went on to kindergarten last year with no issues. He is bright, likely gifted as well, and early intervention only helped.
As far as getting "labelled" and that impacting him later on, I think denying him help to communicate now on the fear that he may get a label that may impact him later on is putting the cart before the horse. Early intervention is often separate from the school based assessments as it only goes up to about age 3 (though that can vary), so later schooling only needs to know about it if issues continue up until school age, at which point I believe you would want to school to know about it. EI isn't going to do anything but help your nephew. It's been a godsend to us and my happy 2 year old is now talking up a storm and is set to end his EI this month because it's been such a turn around.
posted by katers890 at 7:38 AM on August 8, 2014 [1 favorite]
I had a friend whose kid had all the issues your nephew does, who did the early intervention testing, found out he had severe hearing difficulties, which were not obvious at all. Even after fixing that, he tested as having some autism like symptoms. He got extra help with everything and went on to kindergarten last year with no issues. He is bright, likely gifted as well, and early intervention only helped.
As far as getting "labelled" and that impacting him later on, I think denying him help to communicate now on the fear that he may get a label that may impact him later on is putting the cart before the horse. Early intervention is often separate from the school based assessments as it only goes up to about age 3 (though that can vary), so later schooling only needs to know about it if issues continue up until school age, at which point I believe you would want to school to know about it. EI isn't going to do anything but help your nephew. It's been a godsend to us and my happy 2 year old is now talking up a storm and is set to end his EI this month because it's been such a turn around.
posted by katers890 at 7:38 AM on August 8, 2014 [1 favorite]
Another thought about hearing, etc. Is he prone to ear infections/head colds? If he is, I've occasionally seen young kids who would essentially have a fluctuating hearing loss due to fluid buildup in the middle ear. The fluid can sometime linger even after the active infection cleared, so there'd be no pain, but still a degree of poorer hearing. Since there's no pain, it might not be immediately apparent there's a problem. So even if he's passed a hearing screening before, it may be something to keep an eye on. Inconsistent access to good auditory information can have a significant impact on speech development.
posted by ghost phoneme at 11:18 AM on August 8, 2014
posted by ghost phoneme at 11:18 AM on August 8, 2014
This thread is closed to new comments.
posted by Salamander at 5:17 PM on August 7, 2014 [20 favorites]