Advice for a Concerned Grandmother

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thankfulheart62
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Joined: Sat May 16, 2015 6:49 pm

Advice for a Concerned Grandmother

Postby thankfulheart62 » Sat May 16, 2015 7:00 pm

I am new to this board and new to autism spectrum disorders. I have a three year old grandson who I am 90% certain is autistic. He has lost speech in the past year. He only says 26 words and they are often missing their ending. He doesn't even say "Mama". Since he was one year old he has had obsessive behaviors....first he spins anything an everything, he is obsessed with turning lights on and off and he can sit and throw dirt, rocks and leaves for hours on end and he stares into space as he does so. I am reading "Autism Spectrum Disorder: A Complete Guide and it describes him to a T. For two years I have thought his behavior is very atypical....he is different. His parents, my son and daughter-in-law just had twins. He has no interest in them whatsoever. He does not make eye contact with me and says certains words over and over but has no sentences. I am not asking for a diagnosis here and I am not trying to diagnose him myself because I know I am not qualified to do so. However, I am a very concerened grandmother. My son reacted very harshly when my husband and I suggested we have him tested for speech delay and we did not even mention autism. He got very defensive. I am wondering if anyone might have a suggestion as to how I can approach my son with my suspicion. I believe he needs intervention as soon as possible. Everyone else in the family agrees that he is autistic but we are not there yet. Is there some delicate way I can mention my suspicion to my son without alienating him from us. I get my grandson often for sleep overs and we are all concerend. Any suggestions?

kulkulkan
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Joined: Tue Mar 13, 2012 1:37 pm

Re: Advice for a Concerned Grandmother

Postby kulkulkan » Thu May 21, 2015 11:01 am

thankfulheart62 wrote:I am new to this board and new to autism spectrum disorders. I have a three year old grandson who I am 90% certain is autistic. He has lost speech in the past year. He only says 26 words and they are often missing their ending. He doesn't even say "Mama". Since he was one year old he has had obsessive behaviors....first he spins anything an everything, he is obsessed with turning lights on and off and he can sit and throw dirt, rocks and leaves for hours on end and he stares into space as he does so. I am reading "Autism Spectrum Disorder: A Complete Guide and it describes him to a T. For two years I have thought his behavior is very atypical....he is different. His parents, my son and daughter-in-law just had twins. He has no interest in them whatsoever. He does not make eye contact with me and says certains words over and over but has no sentences. I am not asking for a diagnosis here and I am not trying to diagnose him myself because I know I am not qualified to do so. However, I am a very concerened grandmother. My son reacted very harshly when my husband and I suggested we have him tested for speech delay and we did not even mention autism. He got very defensive. I am wondering if anyone might have a suggestion as to how I can approach my son with my suspicion. I believe he needs intervention as soon as possible. Everyone else in the family agrees that he is autistic but we are not there yet. Is there some delicate way I can mention my suspicion to my son without alienating him from us. I get my grandson often for sleep overs and we are all concerend. Any suggestions?


What about the daughter in law? That may be a path of less resistance. From my experience, most parents do acknowledge speech delay easily (and at least one of the parent takes the lead in doing something about it while the other one resists any changes), so I think that is the right strategy. Additionally, the pediatrician should do the MCHAT screening for ASD risk and make recommendations accordingly and of course you can ask the mother/daughter in law to raise this at next appointment or do it herself to get a a more objective assessment of the risk: https://www.m-chat.org/mchat.php

Santosg
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Joined: Sun Aug 17, 2014 5:33 am

Re: Advice for a Concerned Grandmother

Postby Santosg » Thu May 21, 2015 11:35 pm

I can be very hard to break down the natural 'defense' mechanism that people have. Often the problem is not that they can't accept that the child has autism, exactly, but that they are already dealing with so much it might just tip the emotional scales. But there is little choice in the matter. The earlier a child with autism gets help the better their potential outcomes. The most important point to keep in mind, and also convey, is that there are ways to help children with autism. Autism is not an open and shut case. You have the power to really help a child overcome the most debilitating aspects of autism.

I think that the best way to try to make them understand is simple to ask them get additional screening for your sake. Maybe you are just an over protective grandmother.....The worst that can happy is that you are mistaken. If so, you'll all have something to celebrate. If he does have autism, the earlier he gets help, the better he'll be. So, there is absolutely nothing to lose from getting him screened. Nothing. And because of that, there is really no legitimate reason they should be opposed.

You can explain that even if he does not have autism, simple a language delay, getting him examined will open up services that he can use within his community.

Additionally, it might be worth searching youtube for videos of autistic children. For instance, I came across a video of a child with autism that very closely mirrored my own childs behavior, walking back and forth, hand flapping (I am not endorsing the account the video is linked to, just showing you the behavior of another child with autism: https://www.youtube.com/watch?v=eVP9wN1Fqi8.

If you can find a video that really mirrors how your grandson's behavior is stereotypical of autism, it might make a very compelling case.

In terms of alienation, I understand the concern. At the same time, this is an issue above your son's own 'opinion' or 'pride.' You can't be afraid to offend him. Your grandson's future in on the line.

Pirsig
Posts: 83
Joined: Tue Mar 31, 2015 10:47 pm

Re: Advice for a Concerned Grandmother

Postby Pirsig » Fri May 22, 2015 12:54 pm

Just wanted to share my story in case it helps you in any way.

I consider myself to be quite strong emotionally and have had a few situations in my life where I was at the receiving end of some really bad news. I could face all these situations without too much of a problem.

But, nothing prepared me for the day when I took my 2YO daughter to a speech therapist (at that point, I thought she just had a speech delay) and the therapist suggested this could be high functioning autism. I was extremely upset about this, very defensive and when I got back in the car, I thought "I will never see this stupid therapist again and will make sure that I tell everyone I know how incompetent she is". However a week after this appointment, we started observing our daughter closely and realized it was not just speech - she never slept through the night and woke up multiple times with GI discomfort, she was insensitive to pain, she never pointed to things, loud sounds like the vaccum cleaner completely freaked her out, she could not wave goodbye, she had repetitive play with just one toy, etc etc. So, that is when we realized we need to show her to her pediatrician. The pediatrician brushed away our concerns and asked us to wait another year or two before considering a formal screening for Autism Spectrum Disorder.

I have had quite a few negative experiences with doctors (especially with chronic diseases) in my life, so I decided to do my own due diligence and not blindly trust all doctors. So, I found a few helpful books and started reading them and was shocked with the information in those books. Long story short, I got her evaluated with a developmental pediatrician who gave her a PDD-NOS diagnosis. I did not stop there - I found a DAN doctor and started actively working on the medical issues that my daughter was facing. Its been almost 2 years since that point and my daughter is doing very well - we are delighted with what biomed interventions have done for her. We want to keep going for the next 1-2 years, as a recovery seems very likely for her based on how well she has done so far.

Something about the autism diagnosis thing is very scary for parents - and I think at some level most parents are too scared to know the answer. They are scared because they think there is no hope for kids diagnosed with ASD. They do not know that there is a BIG difference between "late onset or regressive autism" and "congenital autism". What you see frequently today (1 in 68 kids) is regressive autism and there are excellent therapies available to reverse this, especially if caught early. Congenital autism is rare (1 in 10,000) and as far as I know, there is not much hope of recovery from congenital autism.

Bottomline - I think you are doing a great thing by gently bringing this up. Expect the initial resistance as this is very common - hopefully, you can tell your son that this condition can be treated and a "moderate" to "significant" improvement is possible if interventions are done early. I think parents will be more receptive if the bad news came with some "hope of recovery".

Winnie
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Joined: Sat Mar 18, 2006 2:48 pm

Re: Advice for a Concerned Grandmother

Postby Winnie » Fri May 22, 2015 8:08 pm

Hi ThankfulHeart62 -- welcome to the forum. Kudos to you for being an observant and concerned grandmother! It sounds like you have valid observations and concerns about your grandson.

I think it was a good idea to initially frame your concerns as involving a “speech delay” – that would have been my suggestion as a way to raise the issue of evaluation. The degree of defensiveness you encountered may be coming from a place of worry they have not shared, or even denial of that worry. I know I spent a little time in that place (denial) trying to think of all the ways my son didn’t have autism :/.

Do you have any way of knowing if his pediatrician has previously raised any developmental concerns?

Also, does your grandson attend any kind of preschool program or Mother’s Day Out yet? Sometimes seeing one’s child with other children the same age, along with concern/feedback from the staff, can serve as a call to action.

I agree with others that addressing his challenges as early as possible is best for your grandson, though I’m sure you don’t want to alienate or anger them. Fortunately (sort of), they will probably need your help (especially with new twins!), so you may be in a position as a caregiver to raise your concerns again. Since he is three raising your concerns again soon might be a good idea – perhaps to mom like kulkulkan suggested (sometimes one parent is resistant to the other’s suggestion that something is amiss). Or you might ask them (in a non-judgmental manner of course) how they would like you to respond certain behaviors or to comments by other people regarding how he communicates or socializes. Hopefully enough hints will nudge them to action; if not, you may need to just speak with them frankly again regarding your concerns and risk the initial fallout.

Your grandson (and his parents) are lucky to have an involved grandparent – after they work through the initial acceptance that their son may need help beyond their parenting, they will really appreciate and value your love, concern, and support. They need you – there will be many learning curves and appointments ahead if he receives a diagnosis!

Meanwhile you can find a lot of info on the internet (a lot credible, a lot not-so-credible, and a lot not credible at all). You may already be familiar with this org, but if not, you might be interested in many of the resources listed on their (huge) site (even if you don’t feel like fund-raising). Here is a page with a lot of info about recognizing signs, along with a link to videos demonstrating typical vs atypical development:
https://www.autismspeaks.org/what-autism/learn-signs

In the event your grandson does receive a diagnosis of autism, the 100 Day Kit would be helpful too – along with some of the other downloadable info on this page:
https://www.autismspeaks.org/family-services/tool-kits

All the best to you -- it’s been many years since I was in the place your children are in now. Here is a post I wrote over nine years ago on this forum (click here) describing our start. My son just completed his second semester as a freshman in college – there is every reason to have hope and believe in your grandson’s potential, regardless of the diagnosis he receives.

Let us know how it goes --
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: Advice for a Concerned Grandmother

Postby Winnie » Sat May 23, 2015 1:03 am

Lest anyone new to autism worry about what “kind” of autism their loved one has and how that may or may not be related to “hope,” I want to address some of the inaccurate info posted on this thread. (sorry Pirsig)

Unfortunately there is plenty of info on the internet passed around as “fact” that certainly isn’t, often promoted by kooky conspiracy/causation sites (like Generation Rescue and Age of Autism, among others) or internet sites and practitioners peddling their treatments. Buyer beware – some of the inaccuracy, myth, and outright falsehood is easy to get sucked into as the vulnerable parent of a newly-diagnosed child. Since autism is a condition with no single (identified) cause or cure -- along with a continual crop of new customers – one will trip across all kinds of crazy treatment claims and questionable testimonials on the internet.

Pirsig wrote:They are scared because they think there is no hope for kids diagnosed with ASD. They do not know that there is a BIG difference between "late onset or regressive autism" and "congenital autism".
Not true.

Probably some of the best current research regarding what we do (and do not) know about regression (and onset of autism) is from a number of Ozonoff studies (***citations and links to several of these studies at end of post):
“Previous studies comparing the developmental profiles of children with regressive and early onset autism have had mixed results. Some studies reported lower functioning in children with regression,7,24,27,28 others found better outcomes for children with regression,29 several reported no differences in developmental profiles,4,6,30,31 and many found just one or two significant group differences out of multiple group comparisons.32–35 The current study found no differences between onset groups on the Mullen and ADOS at a mean age of 3.25 years, regardless of the method of classifying onset.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668453/


Pirsig wrote:What you see frequently today (1 in 68 kids) is regressive autism and there are excellent therapies available to reverse this, especially if caught early.
There are no therapies known or shown to “reverse” regressive autism. This is NOT a claim ever made by a legitimate practitioner or therapist. If anyone claims to sell or know a treatment that will “reverse” regressive autism, regard it as a flag and do further homework/research in credible places.

However, that said, there are children with autism who do lose their diagnosis -- some research suggests up to 20% of children diagnosed with autism may lose their diagnosis -- and some to the point of being indistinguishable from their peers. There is no way to “project” if or when a particular child will likely “recover” based on either rate of progress or implementation of a particular treatment – anyone or any practitioner making such a claim should be disregarded as either uninformed or unethical. For more info (accurate info) on what is known (and unknown) about optimal outcome and loss of diagnosis (referred to as “recovery” by some people), there is a forum thread dedicated to the research and what is known on this topic (click here).

Pirsig wrote:Congenital autism is rare (1 in 10,000) and as far as I know, there is not much hope of recovery from congenital autism.
This is absolutely not true on either count – but a good example of nonsense circulated on the internet. Where does info like this come from? See Congenital Versus Regressive Onset of Autism Spectrum Disorders (here), the Ozonoff study cite above and one that follows, as well as the following lengthy list of research articles regarding developmental trajectories and regression:

https://iacc.hhs.gov/events/2014/full-committee-mtg-articles-trajectories-regression-july8.shtml

Just one of the many learning curves that looms when one has a loved one with autism -- sorting fact from fiction on the WWW. :/ There is hope for every child with autism. :)


*** Several of the Ozonoff studies mentioned earlier in post:

J Am Acad Child Adolesc Psychiatry. 2011 Aug;50(8):796-806.e1. doi: 10.1016/j.jaac.2011.03.012. Epub 2011 Jun 2.
Onset patterns in autism: correspondence between home video and parent report.
Ozonoff S1, Iosif AM, Young GS, Hepburn S, Thompson M, Colombi C, Cook IC, Werner E, Goldring S, Baguio F, Rogers SJ.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668453/

Autism Res. 2008 Dec;1(6):320-8. doi: 10.1002/aur.53.
The onset of autism: patterns of symptom emergence in the first years of life.
Ozonoff S1, Heung K, Byrd R, Hansen R, Hertz-Picciotto I.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2857525/
Winnie
"Make it a powerful memory, the happiest you can remember."

apraxiaincanada
Posts: 9
Joined: Tue Jun 16, 2015 11:14 am

Re: Advice for a Concerned Grandmother

Postby apraxiaincanada » Mon Jun 22, 2015 2:02 pm

Just a question for the grandmother, what does your grandson eat? How often does he poop? What does it look like? Does he eat meat? All kids need b-12 for their brains to form properly, and b-12 is in meat. Does he eat raw veggies and fruit? If not he won't have the enzymes he needs to digest food. Do the parents smoke, do they live near a highway, or airport? Does the son or Mom have autism, apraxia, or speech delays, or does it run in their families? Also what do you do to help him, if he has a communicative disorder, he will need someone to talk to him, like 10 words per minute, minimum, all day, every day, as his grandmother, are you willing to dedicate time, talk to him and help him rebuild communicative skills? Plenty of grandparents just want to diagnose instead of actually pitching in to do some of the work in helping, that is my experience with my daughters' grandparents.


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