Autism Support Group

Emotional Support
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My 5 year old granddaughter was diagnosed with Level 2 Autism two years ago. The year+ leading up to her diagnosis was filled with doctor, psychiatrist, and therapist appointments, everyone working together to find out what was behind her behavioral traits. Both of her parents work, so I was a primary caregiver during her first three years. I noticed little things when she was around 15 months old… instead of repeating words and phrases we said to her, she created her own language, which she still uses today; she began “spinning” around this time as well, and she would spin round and round in a small space without ever getting dizzy; as she got a little older, she struggled to maintain attention on anything or anyone and preferred to just do her own thing. I’ll never forget the day I took her to OT therapy and had to tell the therapist that she was lining up her smaller toys, arranging them by size, color, and type. That was the beginning of a significant life change for all of us.

She has since started school and has done well for the most part. She’s generally happy and outgoing, but she doesn’t really play with the other children that much and is happy to be on her own. She has a couple of Paras who are always with her at school, and I’m so thankful for them. About the only time she has a meltdown at school is when someone other than me picks her up. The structure and routine we all provide for her holds her little life together… and ours, too.

@TigerMatriarch and I have noticed a need for a support group for those of us who are in recovery and caring for loved ones on the spectrum. It feels good to talk with others who understand what you’re going through and share their experiences with you. @Andrea4 and @Willowwhiny, we all know we’re not alone, but I think when we’re trying to remain sober while caring for our special needs kiddos, having this space can be a lifeboat for us when we’re sinking. :purple_heart:

Edit to add: We have a private thread as well if you’d prefer to share there. Just post here and ask to be added, and one of us will send you an invite.

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Hello Kat here

My 8-year-old son has autism. He is developmentally delayed with reading and following instructions and needs a full-time aide at school. He repeats the same word or sentence often. He loves SpongeBob and Mikey Mouse Clubhouse, and likes to draw. No severe behavioral issues though.

He is the youngest of 4 boys. The eldest is 15 and has been diagnosed with what used to be called Aspergers. He doesn’t socialize much in real life but has no problem online. He’s a good kid.

My second son, 13, who survived cancer at age 3 has been diagnosed with anxiety and depression and has been on SSRI meds since age 8. He is being evaluated for autism due to social problems and isolation.

Oh, and yes, my ex-husband has diagnosed Aspergers.

Great idea for a thread!

Kat

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Thank you so much for starting this @ShesGotMoxie I didn’t even know where to begin. My grandson Michael is 8 years old and is autistic with learning disabilities and difficulty with verbal communication. He can become VERY upset and act out when he can’t express himself so others can understand. I am the go to for the school when my daughter and son in law are at work. I have him a couple days a week as daycare in our area disappeared with Covid and those left are reluctant to take an autistic child.

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My granddaughter’s language skills have improved, and she speaks in full sentences at times, but the jargon she made up as a baby still takes center stage. She recognizes the words associated with the pictures in her communication binders, but she can’t read, yet.

With all the different therapies she has, her progress leaps ahead in certain areas and falls behind in others. She has a strong support system, though. :slightly_smiling_face:

We’ve noticed that anxiety is a huge factor in her behavior. When she’s calm, watching her shows (which we limit), playing with toys, or drawing/coloring, all is great. But sometimes we never know when a thought comes into her mind that sets off a frenzy of emotions and anxiety. It can be frustrating not to know how to help, but we’re learning. :purple_heart:

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Michael also has his own language. Oddly enough it was my grand daughter Emmy (Michaels cousin and only 7 months older than him) who cracked the code on that. She then played interpreter until we slower adults got up to speed.

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You are a blessing to them, I hope they (and you!) realize that. :blush: Not being able to articulate the big emotions is something that will set off my granddaughter. Thankfully, we’re all learning how to handle those times. When she’s here and it’s time to go home, very rarely does she not have a meltdown. I’ve learned that it’s very calming for her to have some time to herself under “Mimi’s bed”. :relaxed: She will tell me that she “needs a moment”, and she goes and lays down on the rug under my bed. Sometimes it’s 10 minutes or more and sometimes it’s only a minute. Then she puts her shoes on and we go home.

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Michael now asks for “time to relax” when he’s getting over whelmed and he retires to the upper bunk of the spare bedroom bunk bed. That has been a huge deal getting him to this point.

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Great idea starting this thread Moxie.
I’m kind of amazed about the number of children of parents on here that are in this situation. I had no idea.
Thank you Talking Sober
:pray:t2::heart:

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That was a breakthrough for us, too! When they recognize they’re about to lose control, and they let us know… no talking, no touching, I need to be alone to work this out. That’s huge! :blush::purple_heart:

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The most difficult thing of all the challenges though is how inadequate I feel. Covid added more challenges to all the autism challenges. It’s been very hard for mom and dad and me to be enough.

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I understand that. My granddaughter’s OT, ABA, and speech came to a halt with Covid. Fortunately, her school is visited by a speech therapist twice a week now, and ABA is done in-home. Between the 3 of us, we handle OT therapy. I have more tools than I know what to do with! It’s just implementing those at the right time, in the right amount, that gets hard when I’m struggling with anxiety myself.

You are not inadequate. You are brave and loving and strong. :heart:

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Rebecca @Ravikamor sent me a very interesting article about the relation between addiction and being neurodiverse or having neurodiverse people in your surroundings. It boosts the likelihood of addiction. In some cases tremendously.
Basically, I am over 8 times more likely to become an addict.

https://www.theatlantic.com/health/archive/2017/03/autism-and-addiction/518289/

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I’ve thought of a saying to help people be more accepting of themselves if they have autism.
“We’re wired differently, but that doesn’t mean we’re defective.”
This realisation really helped me. I’ve also faced almost nothing but acceptance for my autism. Except for one guy calling me a psychopath, but I think that was a very poor attempt of being funny.
Sure, I’ve been bullied a lot for being different, but never by people who knew I have autism. I didn’t even know it myself at those times :man_shrugging:

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I completely agree with this. My son has actually thanked me for not treating his daughter differently. I told him she simply is who she is to me… a beautiful, loving little creature with a joy that’s contagious. Yes, her behavior is sometimes a little more complex than other children’s, but I wouldn’t want to change that for anything. :slightly_smiling_face:

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This is soooo beautiful to said!!! Hope more families think like this!!! I think now is something that is more normal to see ( I don’t know if that’s the correct word) but just like you said her behavior is different but there’s nothing wrong with that!

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Understanding the three levels of autism and why autism is diagnosed differently since 2013… there are many articles on this subject, but I found this one explains it best.

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Hey all!
I have a 15 year old son who is high functioning. He seems to have really found his stride these last 2 years but whoooo what a time we had all the previous years with schools. It’s good to know there are others out there!

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Hey everyone my daughter is “high functioning” when she was diagnosed there weren’t these “levels” they have now. When I look at the criteria for the I would say she would have tested at a level 1.5 when she we had her diagnosis done. Although she is highfunctioning she needs a lot of support in school. The reasons for that have change over the years. When she was in elementary school I couldn’t seem to help her very much with her regulation and her sensory processing was overwhelming. It was a lot of work. I had a large team of teachers, a speech therapist an OT, a psychiatrist, a government placed counselor all working with her. She was deemed high risk due to suicide ideation at the age of seven and they were wanting to place her in the psychiatric unit at Children’s Hopsital so they could monitor her behavior better. I refused. My child was so full of anxiety she has slept with me until just last year. She has been on so many medications it was crazy but like @Sunflower1 said about her son there was a shift in my daughter at about 12. She asked to come off her meds so we tried and she did great. Now however she is feeling the pressure of having extreme ADHD and being in Gr 10 not medicated. The course loads are heavy and her attention deficiet does not allow her to work at the speed of a neurotypical child. Unfortunately she is very resistant to trying medications as she has some very bad memories attached to them, I understand this. As much as it pains me to know that her life could be made easier I need to respect her choice and allow her to make decisions when it comes to her body. She turns 16 today, she is brilliant, artistic, kind, hilarious and she is my best friend. I was blessed with an angel and everyday I am in awe that I have been given the chance to have such a human in my life. I love her. :heart:

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First of all… Happy birthday to your girl! Sweet 16! :smiling_face_with_three_hearts:

With all of the early intervention, I believe my granddaughter will eventually progress to level 1. She’s now at level 2, but in the past couple years her speech has improved tremendously, sensory processing comes much easier, and she eats on her own now. She still adds to her language a lot of the jargon she created when she first began talking, but she’s also learned how to leave it out when she has a need to express herself. We’re working on that during overwhelming times, too, and she seems to be responding well.

She started Pre-K at age 3, and it was tough the first year. She would have total meltdowns if anyone other than me picked her up from school. The teachers quickly implemented a picture bracelet into her school day, and when she was shown and told throughout her day who would be picking her up, it reduced those meltdowns. Routine has been key for her and us. It’s not as overwhelming when she knows exactly what to expect. She has a magnet board at home and at my house for a visual schedule of morning and afternoon activities. Even though she still has mornings that are rough for her, this board has helped tremendously with routine.

So far, there hasn’t been a sign of ADHD, so she’s not on any medication. I agree with that diagnosis, because my son, her dad, had extreme ADHD growing up. Sadly, I didn’t have all the tools available for him like there are today. Meds were the only solution offered, and after trying several different ones, I finally said no. He turned into a little person that wasn’t the true him. He didn’t play, he didn’t interact, he just became zombie-like. Therapy was never offered. So I had a meeting with his Kindergarten teacher and we came up with ways to help him stay settled in class. There were no Paras available, so between the two of us we helped him get through that first year. I’m really thankful to see all that’s available in the way of support now.

It’s inspiring that you’re allowing your daughter to have a voice when it comes to her meds. As close as you two are, she will very likely tell you if she realizes it’s all too much without them. My adopted nephew has severe ADHD, and while doing trial and error with his meds, he went through horrific psychotic episodes. He physically hurt my sister, pounded my BIL with his fists, and had horrible depression, all while under age 6. No one could handle him, and the meds eventually caused suicidal tendencies. He walked out onto a highway in front of their church with an 18-wheeler bearing down on him. He was so completely overwhelmed with all aspects of life that he didn’t want to live it. His doctors also wanted to monitor his behavior in a children’s psychiatric hospital, but my sister and BIL said no. With his psychiatrist’s help, they weaned him off all of his medications, and it was a difference between night and day. He’s 16 now and takes one med that allows him to be himself while calming his mind enough to participate productively in school, church, and other social activities. It’s been a hell of a ride for him.

My oldest daughter’s 6 year old son has extreme ADHD, and after two meds that didn’t work at all, he’s on one now that’s made an incredible difference in his behavior. He still isn’t sleeping throughout the night, but for the past several months he’s actually sleeping in his own bed. My daughter has been exhausted and sleep-deprived since he was born. But she’s tireless when it comes to getting access to anything, meds and therapies, that makes his life easier.

Like your daughter, these three kids are brilliant, artistic, kind, loving, and funny. They bring much joy to our lives. :heart:

Thanks so much for sharing. Happy birthday, chicklet! :tada::balloon::blush:

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Each of my 4 sons has ADHD, the eldest 3 are on stimulant meds but the youngest (age 8) with the most affecting autism is on a med called Intuniv which is not a stimulant. It seems to help him.

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