Non-communicative grandchild needs help
July 21, 2010 3:24 PM Subscribe
How to convince my grandsons parents to seek testing/diagnosis, (and potential intervention and treatment) for Autism Spectrum, and what, if anything, I can do from a distance.
Austism Spectrum Disorders seem to run in our family. I, and two of my four children have AS, and it appears to go back further as well. One of my grandchildren, whose parents are not AS, would appear to have many signs and symptoms of it.
When he was 8 months old, his mother ("A) took my advice and presented the idea and information to J's pediatrican, who initially was ambivalent, but a few months later felt it was a good possibility. Other social service staff also agreed, and it looked like J was going to get help. But J's father ("R") decided that there was nothing wrong with J and he didn't need any early intervention or testing.
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Soon after this, the family fell apart, J stayed with A , who was having emotional difficulties, and J and his step-sister were put in relief care (daytime only), but were not in any formal programs. Then J was being taken back and forth between A and R, both of who are reasonably good parents, but the stress and fighting cannot be good for the children involved. (J is 3, has an older step-sister, age 6, and a younger half-sister who is 10 months).
J is 3 now, and not talking, nor does he attempt much communication. He did respond to me and play with me when I met him at his level, using cars to communicate. Many of his behaviour problems have evened out somewhat, but he still presents strongly in the Autism Spectrum (I am not a professional, but well researched, and J's aunt has a degree in Special Education/Social Services). J's aunt is positive of the diagnosis, as are some of her colleagues. J's parents are now BOTH in denial of any problem.
My concern is that, if J were to be in early intervention and treatment right now/soon, then his prognosis is quite good for future school years. If he is not dx'd and treated until after he is in school, the prognosis is not as positive, and worse the longer it goes on. I really don't want to see J floundering like one of my children did, who was not dx'd until age 15.
Also, as a "grandparent from a distance", is there anyway I can help? (I saw them a few weeks ago, but likely will not be in their area again for another year). How can I encourage them to keep looking for help they dont think they need, especially without being a nag? Or should I just let things be and trust all will turn out well (as in MYOB).
Any input and insight would be very helpful. They are in Oregon.
Austism Spectrum Disorders seem to run in our family. I, and two of my four children have AS, and it appears to go back further as well. One of my grandchildren, whose parents are not AS, would appear to have many signs and symptoms of it.
When he was 8 months old, his mother ("A) took my advice and presented the idea and information to J's pediatrican, who initially was ambivalent, but a few months later felt it was a good possibility. Other social service staff also agreed, and it looked like J was going to get help. But J's father ("R") decided that there was nothing wrong with J and he didn't need any early intervention or testing.
,
Soon after this, the family fell apart, J stayed with A , who was having emotional difficulties, and J and his step-sister were put in relief care (daytime only), but were not in any formal programs. Then J was being taken back and forth between A and R, both of who are reasonably good parents, but the stress and fighting cannot be good for the children involved. (J is 3, has an older step-sister, age 6, and a younger half-sister who is 10 months).
J is 3 now, and not talking, nor does he attempt much communication. He did respond to me and play with me when I met him at his level, using cars to communicate. Many of his behaviour problems have evened out somewhat, but he still presents strongly in the Autism Spectrum (I am not a professional, but well researched, and J's aunt has a degree in Special Education/Social Services). J's aunt is positive of the diagnosis, as are some of her colleagues. J's parents are now BOTH in denial of any problem.
My concern is that, if J were to be in early intervention and treatment right now/soon, then his prognosis is quite good for future school years. If he is not dx'd and treated until after he is in school, the prognosis is not as positive, and worse the longer it goes on. I really don't want to see J floundering like one of my children did, who was not dx'd until age 15.
Also, as a "grandparent from a distance", is there anyway I can help? (I saw them a few weeks ago, but likely will not be in their area again for another year). How can I encourage them to keep looking for help they dont think they need, especially without being a nag? Or should I just let things be and trust all will turn out well (as in MYOB).
Any input and insight would be very helpful. They are in Oregon.
Best answer: How can I encourage them to keep looking for help they dont think they need
You can't.
One of my colleagues - who also works in autism diagnostics - knows that her nephew has autism. She has gently broached the subject with her brother and was shut down. There is nothing else she can do but wait until he is ready to have that conversation unless she wishes to risk alienating herself from her family.
Has he been assessed through his county's educational service district? Not talking at 3 is a problem, regardless of whether he has autism or not. That's probably the way I'd approach it - by talking about getting him help with his language and recommending resources without dropping the "A" word (which is so terrifying to families that they would rather live in denial than have that particular fear confirmed). Regardless of what his eligibility is (school/county systems can't make a diagnosis, only educational eligibility) he should qualify for speech therapy which will help immensely with his communication and prognosis.
I am in Oregon and work with children on the Autism spectrum. Feel free to mail me for more info regarding resources that are specific to their area.
posted by lilnublet at 3:53 PM on July 21, 2010
You can't.
One of my colleagues - who also works in autism diagnostics - knows that her nephew has autism. She has gently broached the subject with her brother and was shut down. There is nothing else she can do but wait until he is ready to have that conversation unless she wishes to risk alienating herself from her family.
Has he been assessed through his county's educational service district? Not talking at 3 is a problem, regardless of whether he has autism or not. That's probably the way I'd approach it - by talking about getting him help with his language and recommending resources without dropping the "A" word (which is so terrifying to families that they would rather live in denial than have that particular fear confirmed). Regardless of what his eligibility is (school/county systems can't make a diagnosis, only educational eligibility) he should qualify for speech therapy which will help immensely with his communication and prognosis.
I am in Oregon and work with children on the Autism spectrum. Feel free to mail me for more info regarding resources that are specific to their area.
posted by lilnublet at 3:53 PM on July 21, 2010
I think you need to gently remind them that this will not go away, as much as they want it to. My brother's 3 year old was just diagnosed with autism, and my brother is very concerned about his son's future and feeling like his dreams for his son have been subverted, whether that is fair or not. They may be feeling that.
Remind them that everyone, but especially J, will do better if he is diagnosed and helped early. They will find their parenting easier if they understand how best to help J. It sounds like there is a lot going on in their lives and this will be a difficult issue for them to deal with. Offer to help remotely - to research services on their behalf, to find books for them to read, to talk to healthcare providers, therapists or consultants. It's hard to know where to find help, who to believe, how to navigate the system.
And, if they still won't do anything, you can continue to offer unconditional love to everyone involved.
posted by Sukey Says at 3:55 PM on July 21, 2010
Remind them that everyone, but especially J, will do better if he is diagnosed and helped early. They will find their parenting easier if they understand how best to help J. It sounds like there is a lot going on in their lives and this will be a difficult issue for them to deal with. Offer to help remotely - to research services on their behalf, to find books for them to read, to talk to healthcare providers, therapists or consultants. It's hard to know where to find help, who to believe, how to navigate the system.
And, if they still won't do anything, you can continue to offer unconditional love to everyone involved.
posted by Sukey Says at 3:55 PM on July 21, 2010
Response by poster: As far as I can ascertain, J has not had ongoing primary care doctor appts for the past 10 months ... he has had ER care and Urgent care for infections. With family in turmoil, (father not taking full responsibility and mother in emotional/mental upheaval ... things that should be happening are not ...
and 2) yes, the relief nursery should be detecting the problem, according to J's aunt who volunteers at one in another county, but A has not said any more to me about him being ID'd for AS ... just says "they" say he isn't now. (Uncertain who "they" is)
For the record, R (father) is my son, but will not discuss this issue with me or anyone else. A (whom I have a good relationship with) is receptive until R convinces her (again) all is well. Sigh.
posted by batikrose at 3:58 PM on July 21, 2010
and 2) yes, the relief nursery should be detecting the problem, according to J's aunt who volunteers at one in another county, but A has not said any more to me about him being ID'd for AS ... just says "they" say he isn't now. (Uncertain who "they" is)
For the record, R (father) is my son, but will not discuss this issue with me or anyone else. A (whom I have a good relationship with) is receptive until R convinces her (again) all is well. Sigh.
posted by batikrose at 3:58 PM on July 21, 2010
It seems that the best way to get this child diagnosed would be through a psychologist/therapist. Given that the child is in a very unstable setting right now, perhaps the parents would be amenable to "play therapy" as a way to help the child emotionally. While the parents can deny autism, they would find it more difficult to deny that the child hasn't been placed under undue stress due to being passed back and forth and the "mental upheaval" of the parents.
The key right now is to get the kid in front of a professional who can objectively assess the child in a non-threatening setting -- while actually addressing the mental trauma that this kid is going through -- and recommend a fuller evaluation for ASD once the parent is comfortable.
Unless the kid is in a Head Start program or a similar program with an early intervention component (including developmental screenings), it's doubtful that the childcare provider will make a serious attempt at referral, unfortunately -- especially if the parent is reluctant.
As a supportive grandparent, though, I'd say it's best to identify those things that the child enjoys / excels at and support those. From my (admittedly a bit limited) experiences working with children and youth on the spectrum, while the social-emotional and communicative skills are lacking, skills such as literacy and mathematics are usually a bit more advanced. Provide the parents with resources and ideas that cater to J's current developmental level in those sorts of areas so that he can continue to grow and develop!
posted by nayrb5 at 4:51 PM on July 21, 2010
The key right now is to get the kid in front of a professional who can objectively assess the child in a non-threatening setting -- while actually addressing the mental trauma that this kid is going through -- and recommend a fuller evaluation for ASD once the parent is comfortable.
Unless the kid is in a Head Start program or a similar program with an early intervention component (including developmental screenings), it's doubtful that the childcare provider will make a serious attempt at referral, unfortunately -- especially if the parent is reluctant.
As a supportive grandparent, though, I'd say it's best to identify those things that the child enjoys / excels at and support those. From my (admittedly a bit limited) experiences working with children and youth on the spectrum, while the social-emotional and communicative skills are lacking, skills such as literacy and mathematics are usually a bit more advanced. Provide the parents with resources and ideas that cater to J's current developmental level in those sorts of areas so that he can continue to grow and develop!
posted by nayrb5 at 4:51 PM on July 21, 2010
Maybe suggesting just help for language skills so he's ready for kindergarten. If he has speech issues taken care of now he is less likely to miss school time (due to being pulled out of class for speech therapy).
Then an evaluator can possibly help with a referral/information.
posted by beccaj at 5:27 PM on July 21, 2010
Then an evaluator can possibly help with a referral/information.
posted by beccaj at 5:27 PM on July 21, 2010
A friend of mine with an autistic 8-year-old was in this position with a friend of hers. Her friend was absolutely, totally, 100% unwilling to listen to any spectrum suggestions. Finally, my friend said "Hey, given that he's not talking yet, have you considered having his hearing tested?"
The other mother WAS willing to have his hearing tested. . . which led to the kind of assessment and intervention that should have been done 18 months prior. Now her kid has his autism diagnosis and is getting the EI he needs.
posted by KathrynT at 5:35 PM on July 21, 2010 [1 favorite]
The other mother WAS willing to have his hearing tested. . . which led to the kind of assessment and intervention that should have been done 18 months prior. Now her kid has his autism diagnosis and is getting the EI he needs.
posted by KathrynT at 5:35 PM on July 21, 2010 [1 favorite]
Best answer: I'm not sure how you might go about this, but maybe knowledge of effective educational strategies would reduce the "scariness" of the idea of diagnosis. Please don't just take my word for this - I really encourage you to educate yourself (and them, if they'll listen). You might find this website a good starting point. See also this book. You mentioned a family history of autism spectrum disorders - are family members aware of programs like this that may currently be available through their/nearby school districts? Offered services may have changed in a generation, or even within the past few years.
Programs that individualize educational goals, curricula, motivational strategies, and instructional methods to the student while frequently measuring and dynamically modifying those things (i.e., education that is derived from the science of applied behavior analysis) in response to the student's performance have even helped students transition from 1:1 special education environments to independent, full-time participation in a typical classroom setting. See here and here. My google-fu is bringing up an exampel I can give you in Oregon, but contacting local school districts directly about the special education opportunities for students with autism would probably yield more.
Remind them that everyone, but especially J, will do better if he is diagnosed and helped early. Nthing this also. The earlier the better.The earlier the student enters such a program, the greater the likelihood of this transition being made (see here - sorry, no full-text available w/o academic subscription). Additionally, challenging behaviors (e.g., noncompliance, repetitive behaviors, self-injury) that are noticed now will only escalate without being addressed appropriately.
I offer this not as a spiel for buy-in to the (empirically supported) educational intervention I deliver to students with autism on a daily basis, but as an argument against autism being a hopeless diagnosis. It's not a quick or easy fix, and every child (with or without autism spectrum disorders, of course!) learns at a different rate, but the point is, a high quality program can and will ultimately help J to be a better, more engaged kid, friend, family member, and member of society.
posted by shortskirtlongjacket at 8:07 PM on July 21, 2010
Programs that individualize educational goals, curricula, motivational strategies, and instructional methods to the student while frequently measuring and dynamically modifying those things (i.e., education that is derived from the science of applied behavior analysis) in response to the student's performance have even helped students transition from 1:1 special education environments to independent, full-time participation in a typical classroom setting. See here and here. My google-fu is bringing up an exampel I can give you in Oregon, but contacting local school districts directly about the special education opportunities for students with autism would probably yield more.
Remind them that everyone, but especially J, will do better if he is diagnosed and helped early. Nthing this also. The earlier the better.The earlier the student enters such a program, the greater the likelihood of this transition being made (see here - sorry, no full-text available w/o academic subscription). Additionally, challenging behaviors (e.g., noncompliance, repetitive behaviors, self-injury) that are noticed now will only escalate without being addressed appropriately.
I offer this not as a spiel for buy-in to the (empirically supported) educational intervention I deliver to students with autism on a daily basis, but as an argument against autism being a hopeless diagnosis. It's not a quick or easy fix, and every child (with or without autism spectrum disorders, of course!) learns at a different rate, but the point is, a high quality program can and will ultimately help J to be a better, more engaged kid, friend, family member, and member of society.
posted by shortskirtlongjacket at 8:07 PM on July 21, 2010
Make that, *not* bringing up any examples I can point you to in Oregon. I wish you and the family the best - a diagnosis or evaluation may not make family members feel great, but it will ultimately be the right choice for the child. It's not helping J any to not get services to which he's entitled.
posted by shortskirtlongjacket at 8:09 PM on July 21, 2010
posted by shortskirtlongjacket at 8:09 PM on July 21, 2010
Also this: http://www.rethinkautism.com/default.aspx
(That's it - I promise!)
posted by shortskirtlongjacket at 8:27 PM on July 21, 2010
(That's it - I promise!)
posted by shortskirtlongjacket at 8:27 PM on July 21, 2010
This thread is closed to new comments.
- J's primary doctor should note that he's not talking
- if he is in daycare, isn't someone there noticing?
posted by k8t at 3:49 PM on July 21, 2010