Page 1 of 1 [ 12 posts ] 

Cthryn
Emu Egg
Emu Egg

User avatar

Joined: 18 Aug 2014
Gender: Female
Posts: 3

18 Aug 2014, 11:23 pm

I have an 18 mo old Granddaughter I believe may be exhibiting signs of autism. I have repeatedly and diplomatically asked her parents to have her assessed. They finally told me to butt out.
I am not sure what to do, I understand early intervention is crucial.
Can anyone help me ?



Nick774
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 29 Mar 2013
Age: 33
Gender: Male
Posts: 42
Location: Seattle, WA

19 Aug 2014, 1:51 am

What symptoms in particular does she exihibit?


_________________
-Nick
www.23andaspie.com


Cornflake
Administrator
Administrator

User avatar

Joined: 30 Oct 2010
Gender: Male
Posts: 65,510
Location: Over there

19 Aug 2014, 4:34 am

[Moved from Getting to know each other to Parents' Discussion]

Also, welcome to WP. :wink:


_________________
Giraffe: a ruminant with a view.


Marcia
Veteran
Veteran

User avatar

Joined: 14 Apr 2008
Age: 55
Gender: Female
Posts: 2,148

19 Aug 2014, 4:48 am

If you want to maintain a relationship with your grandchild and her parents, then I recommend that you do what you have been asked to do, and that is butt out.

If you are correct, then other people will also comment, and/or her parents will start to see if for themselves.



ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,666

19 Aug 2014, 6:34 am

I agree with Marcia. If the parents are against an assessment and you already broached it, I don't see after a "butt out" that you are going to be successful in persuading them.

If the child is meeting milestones, and the pediatrician is not concerned, it will be easy for them to assume you are wrong even if you are not. If the child is not meeting milestones, the pediatrician may be waiting for the 2 yr appointment to see if there has been improvement.

The best thing to do, is to ease relations between the parents and yourself so that they will be more apt to listen to you if more evidence arises.

Early intervention is helpful, but the brain is plastic, and even if the child is autistic and doesn't get EI, it is not like a window of opportunity closes up forever.

If you have frequent contact with your grandchild, just getting on the floor and interacting will be a big help. We did a lot of EI recommended things, unknowingly purely by accident, just through interaction.

You won't be able to do this if the parents are mad at you.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

19 Aug 2014, 3:14 pm

I guess my question is, how severe are the indications? Is she talking and interacting at all? If so, I think you have time, and don't need to freak out about early intervention, which seems to be most crucial when the child's issues are keeping them from developing at a semi-reasonable pace.

Autism is a spectrum and many lightly affected kids don't get diagnosed until much older. My son, who is considered very high functioning, wasn't diagnosed until he was 7. Before that, it just wasn't possible to be sure what the differences we saw in him were attributable to, and pretty no one was thinking it could be autism. Not having early intervention really wasn't an issue for him, because he was talking and hadn't started to retreat fully inside; if anything, meeting with experts earlier might have kept us from allowing him to be who he was, developing as he needed to, in those early years.

We did have some indication there could be sensory issues, but when I brought those up to our pediatrician he said that the most important thing I could do for my son at that age was pay attention to him. Let him be my guide. Understand what made him tick and respond to his needs based on what I was learning by watching him. There definitely was advice and information I received in those years that proved to be quite helpful but, overall, letting my son be my guide really made the most difference. Toddlerhood is that small window where children get to develop at their own pace and be who they are, before being forced to learn the conformity skills it takes to be a member of society. I will never regret listening to our doctor and giving my son those years.

All of which is a long way of saying that you can't force this with the parents, and perhaps it is just as well. I know there is a lot of pressure to get kids assessed early, but it isn't always necessary, and there really will be plenty of people interjecting their opinions along the way, so if something needs attention, the parents will hear about it.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Cthryn
Emu Egg
Emu Egg

User avatar

Joined: 18 Aug 2014
Gender: Female
Posts: 3

19 Aug 2014, 6:40 pm

Thank you all for responding. I am having a bit of trouble navigating the site. I have 3 kids and 4 other g-kids. I have this one once a week for the day, so I am able to do lots of things with her.
She doesnt use words but jabbers a lot. She doesnt wave, play pat-a-cake or point. Her eye contact is minimal but hearing is excellent. She responds to her name about 50% of the time.
She doesnt nod or shake her head no. I have never seen this delayed of development in the other family members, I am glad to hear reassurance about the brains plasticity. I have been feeling that we are missing intervention opportunities.
She likes to collect 'things.' Rocks, her magnetic letters, small things. I dont under stand some of the abbreviations you all have used. If anyone can direct me to good web sites for how I can maximize my time with her I would appreciate it,
I think her Dr is totally missing things. My kids have never even been handed a developmental check list.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,683
Location: Northern California

20 Aug 2014, 1:18 pm

EI = early intervention (were there any others?)

From your description, I can see why you are concerned. It has to be frustrating to see things but not have the power to at least get a professional opinion.

I think a common at-home therapy is floor play (Floortime?), which shouldn't have any negative effects if there is no autism, so perhaps that is a good place for you to start. Sorry I don't have links, but you should be able to search it. Temple Gradin's mother pretty much used intuition and drive to help her daughter be her best self, so even if there is autism that is being missed, you definitely have an opportunity to make a difference.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Last edited by DW_a_mom on 20 Aug 2014, 6:34 pm, edited 1 time in total.

ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,666

20 Aug 2014, 1:47 pm

I don't think it is typical to be handed a developmental checklist. We bought books, ourselves. The doctor usually asks questions and makes observations based on the child's behavior. I don't have links to Floortime as we never did the formal version. I did play on the floor with him based on what he was doing and teaching miscellaneous things to uncover new interests to explore. Does your child like sorting and stacking? That is a very good opportunity, b/c you can point out the shapes and colors of blocks as well as any pictures or letters on them depending on what kind of blocks you are using. If your grandchild has expressive language skills you can ask questions about the blocks, like, "What shape is this?" Obviously picture books are a great tool to use, as well. Taking the child on walks and pointing things out and asking questions (expressive skill depending) is great, too.

We never focused on eye-contact ourselves, too much, but you can gently try it if it is not painful to the child.

What does your grandchild like to do? With autistic children, special interests are usually really important. and of course any child will really like doing what s/he likes.

Edited b/c I went back to see that your granddaughter likes to collects rocks and magnetic letters. You could talk to her about her rocks and describe them. The colored magnetic letters give you an opportunity to teach letters, colors and words. You could spell out things in the home and put the objects next to the words or point to whatever you spelled. Even if she has no receptive language, you can ask anyway and pause for her to babble so she can see how give and take in conversation go.

Edited again to add that at 18 months the nurse encouraged us to do imaginative play. We didn't have much luck b/c my son was not interested really until he was 3 and 4. At 9 he does it all the time. Delay does not mean never it means delay. Anyway, depending on how receptive your granddaughter is you can imitate animals and see if she will mimic it or try to play tea/dinner party. Symbolic play is another thing you can work on. You can pretend a banana is a phone, you know, that kind of thing.



setai
Raven
Raven

User avatar

Joined: 9 Oct 2013
Gender: Female
Posts: 116

20 Aug 2014, 3:12 pm

Cthryn

Now that you have described your granddaughter a bit better, I can see why you are concerned. However, 18 mos is very young. You have planted the seed and I doubt her parents will forget what you said even if they are in denial right now or are right and she is just a bit different than the other kids, but within developmental range.

Since you get her once a week there is a lot you can do to help without pushing mom and dad to get her tested. Talk, talk, talk to her at her eye level and with very short 2-3 word sentences. Narrate everything you do. Try to breakdown activities like waving or patty cake into smaller pieces. I would work on pointing/reaching for what she wants and some form of yes and no. That way she can get her basic needs met and will help her frustration level when she hits the terrible twos and might not have words yet.

ASD kids often need to be taught what other kids pick up on their own, doesn't mean they can't learn, you just have to learn how to teach differently. If she likes magnets, that is a great place to start. If she can tolerate it, take some of them and get her to ask for them, one at time back. Her asking might be a grunt, a point, a grab or even looking in your direction(not necessarily your eyes). If you understand, that is good enough for now. Practice that until she is pretty consistent and then, tweak it a tiny bit.

For my guy it was puzzles, we got him to request the next piece of puzzle. He started with having to reach for it and say something close to "puzzle", once that was down it was "puzzle, please" and now it is "I want puzzle please" and reach politely for it, not grab. That took 4 months and he was 4 not 18 mos and we worked 6 days a week.

You also need to try to generalize skills which means maybe start with the magnet letter, but once she step one down then try it for cheerios as well. Many ASD kids struggle with generalizing and if you can get that in young, you will have done a great service to her. All that I mentioned and the other folks here mention will be great for her even if she doesn't end up being autistic. Make it fun and both of you won't feel like you are training but just a more structured play than you are used to. Really celebrate the wins and look to her for what she likes, not what most kids would like. Stick w her interest and it will be so much easier.

Many ASD kids and adults have sensory issues. Some noises, textures, light levels, tastes or smells are actually painful to them that you would assume are just normal or just slightly annoying. Just because a normal kid is ok with flashing toy or a tag on a shirt, if your granddaughter is upset by it, realize it might be causing real distress.

I have included a website that really helped me decipher a lot of the lingo and really break down what each treatment does. It also has some wonderful videos of kids and young adults on the spectrum.

http://interactingwithautism.com/

You are a really wonderful grandmother to seek out help for her like this. Come back if you have questions.



zette
Veteran
Veteran

User avatar

Joined: 27 Jul 2011
Gender: Female
Posts: 1,183
Location: California

20 Aug 2014, 3:46 pm

Since you watch her one day a week, you could certainly learn some Floortime activities to do with her. On YouTube.com, you can search for "Floortime Stanley Greenspan", to see some videos. You can also look for books by him.

If you search for M-CHAT, that is a developmental screening that is used at this age, you could rate it now and again 4-6 months later. Not sure how to get the questionaire or results to the parents or the doctor without risking your relationship with the child, though. It may be that the parents become more concerned as your granddaughter gets older. While intervening now is obviously ideal, there are plenty of kids who are identified at 24 or 36 months who go on to have very good response to therapy started at those ages.



Cthryn
Emu Egg
Emu Egg

User avatar

Joined: 18 Aug 2014
Gender: Female
Posts: 3

20 Aug 2014, 10:43 pm

I appreciate the time everyone took to help me. The only abbreviation WAS 'EI' which I figured out as soon as I posted. LOL.
I will watch the floortime video and check out the website on interacting.
The advice about breaking sentences and activities down to small segments was VERY helpful. I read somewhere to talk to babies in complex sentences, so I have been doing that. I will try the 2-3 word sentences now.
I did do the M-Chat a few months ago and she scored 9 out of 20. I did it this week and it was 12 out of 20 indicating high risk.
I didnt show her parents, fearing that if they even heard the word autistic they would bolt.
Again, thank you everyone!