So many questions...

[calicoandgreen]

My partner and I are both gifted and have an official ADHD diagnosis + are self-diagnosed with Autism + SPD. Turns out, our daughter is exactly the same as we both were as children, with of course some differences in the way things are displayed, but overall the very same as us. We know with our rational brains and with our guts that she is autistic + has ADHD and SPD (and maybe ODD too) but she hasn't been officially diagnosed yet.
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So first question: Considering I'm going to homeschool her for at least her elementary years and am already actively educating myself on how to help her cope and learn better with her conditions, should we get her officially diagnosed? I've read that girls aren't usually diagnosed before they start having a hard time going through puberty so since my daughter is only 5, would it be better to wait before trying to make things official? I'm going to talk to her doctor about the ADHD stuff since that's fairly easy to diagnose but I'm concerned about the SPD + Autism things.
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Question number 2: Things have been getting complicated at home. One of her uncles and his 4 children have been living with us for the last 2.5 weeks (so much unbearable CHAOS, thank whatever they're supposed to go home tonight. We love them but so do we our peaceful routine haha) and the differences between her and her neurotypical cousins are extremely apparent (at least for us adults + her older cousins). She has several meltdowns a day, cries and screams a whole lot, wants to decide and control everything, talks all the time about her own special interests and doesn't listen to her cousins when they speak, etc, etc (you know what I'm talking about). Other family members have been having mean words about her and I'm wondering, should I / would I be 'allowed' to talk to them about how my daughter is different? Even though we don't have a real diagnostic? Because they've been saying these bad things about her in front of her and it's very hurtful especially considering this is not her fault that she doesn't relate to other people and that socialization 'rules' don't make sense to her. Or that she can't understand why most people are disgusted by bugs or afraid of rodents and herps (I can't either mind you haha). I'm trying my best to teach her the neurotypical rules (I had a good teacher myself so that helps - thanks mom!) but other people are getting more and more annoyed by her and I wish I could say something to them so they show compassion to my little girl instead of hurting her for things that are way out of her comprehension or control.
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Question 3: Should I tell her about herself? She already knows she has very sensitive senses, is extremely bright and talented in the things that are of interest to her, and that her heart is so very easily bruised. Basically, she knows she's special and different. But I'm not sure to what extent she realizes it. I know I didn't see anything wrong with myself until I was around 11-12 yo, when every girls were all about their new crushes and I was just sooo very far away from all of this, still playing and acting like a kid. But still, I've always had this inability to understand how friendship worked and why my playmates would do this or that, always putting myself on the edges trying to grasp something that was out of my reach. I think I would have loved knowing why I was so different as a young kid and I would definitely have liked knowing by age 12. It would have made my life so much easier, at least in the self-worth and self-understanding areas. I wouldn't have lost so many years desperately trying to fit in in a world that doesn't fit me.
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Thanks a bunch to anyone / everyone taking the time to read and / or answer. Hope you have a wonderful day.

 

[Tom]

All good questions. I don't know there is a clear answer to them. More there are pros and cons to consider.

I do not have time now but will write a bit more about it.

 

[VictorR]

For the first question, in regards to seeking an ASD diagnosis and I'd say yes - primarily as it would enable access to funding / supports that she wouldn't otherwise get.

For example

Retraite Québec - Eligibility requirements for the supplement for handicapped children

and

Services for persons with a physical or intellectual disability or an autism spectrum disorder (ASD)

The Ministère de la Santé et des Services sociaux provides numerous services to assist persons with a physical or intellectual disability or an ASD.

www.quebec.ca

As for the third question, I think that's really going to be a "case-by-case" situation and when you deem is the right time. I think 10-12 would probably be a good time, if they haven't already been advised by then, as they'd likely be mature enough to clearly recognize their differences, especially as they head into their teenaged years and everything that that entails, and the knowledge can help them recognize situations where they may get hurt and how to engage in self-care to avoid burnout, etc.

 

[Gerald Wilgus]

She tries to control everything she can because she is powerless to change the things causing her stress. Educate yourself about the social needs of an autist as she matures.

I had normal desires for connection yet I did not have the skill to make that possible. I denied my emotions, felt rejected by life, and developed a dysfunctional self image and body image. And I had to break out of that cage when Autism was seldom diagnosed and people thought me normal. The experience was traumatic and I am doing Cognitive Processing Therapy for the PTSD.

 

[calicoandgreen]

She tries to control everything she can because she is powerless to change the things causing her stress.

Thanks so much for the reminder. In chaotic social situations (are they ever not chaotic anyways) I tend to forget this oh so important truth about her (and myself). I'll try to keep this in mind more actively so I am able to truly be there for her next time.

Thanks to everyone who took the time to answer so far, that's so very appreciated.

 

[Gerald Wilgus]

Thanks so much for the reminder. In chaotic social situations (are they ever not chaotic anyways) I tend to forget this oh so important truth about her (and myself). I'll try to keep this in mind more actively so I am able to truly be there for her next time.

Thanks to everyone who took the time to answer so far, that's so very appreciated.

I'd venture a guess that a lot us are, like; "been there . . . done that." The powerlesness of desiring to change the social but not having the tools and temperment to do so until nearly thirty-something led to my PTSD.

 

[Tom]

I have a lot of thoughts on this actually. But writing a lot of text is hard for me so I will just write in bits if that works out. We did not get our son diagnosed nor tell him (yet). But we have somewhat unique circumstances and I wouldn't suggest that to someone without serious consideration.

I did want to first express my condolence for having company for so long. I think one of the concentric circles of Dante's Inferno is a level where relatives stay with you and never leave.

One of the common thoughts among us is one of the main factors to decide to get a diagnosis is if you think you will need services or accomodations. There are many different things that can come into play and may be available depending on your situation.

Something to remember as well is this type of condition/diagnosis is considered private information. There are only a few situations such as with doctors you are seeking treatment with or professional services where you are required to divulge it. As a parent you are guardian of that info for a while.

 

[calicoandgreen]

I did want to first express my condolence for having company for so long. I think one of the concentric circles of Dante's Inferno is a level where relatives stay with you and never leave.

They were supposed to leave yesterday but they're still here haha Dante sure knew some things about life. It reminds me of Jean-Paul Sartre 'L'enfer c'est les autres' (Hell is other people). Thanks for your compassion, it sure is appreciated!
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As a parent you are guardian of that info for a while.

I really like how you put it and I'll do my best to be a good guardian of my daughter's privacy.

 

[calicoandgreen]

She tries to control everything she can because she is powerless to change the things causing her stress.

I've been told so many times by my therapists over the years how vile was my need for control over things that I somewhat had forgotten why it ever came to exist. But you've put it just the right way. I'll try to see mine and my daughter's controlling bouts with compassion and try to understand their underlying causes so I can maybe bring us more peace.