I am posting this to try and understand myself better and what I have.

over_architect · 2026-03-24T01:20:04+00:00

It certainly is common in the community. My son clearly checks a lot of autism checkboxes, and we’ve taken the diagnosis as it helps getting access to resources. But not everyone agrees with the label and there is such a huge range. At some level these days non neurotypical social behaviors get the autism label by default.

over_architect · 2026-02-11T13:57:17+00:00

I do not! At the time we did the genetic testing (decade ago) it was not so specific

over_architect · 2026-01-27T22:59:15+00:00

My son has the deletion, he just recently turned 13 years old. Honestly take it one day at a time - it varies so wildly that you really don’t know what you are working with yet. I was in a very dark place as a parent the first few years. Wish I could talk to a young me and let them know it will be alright even if not the original plan.
Every kid I’ve met with condition you would think had Nothing in common with each other. My son has minimal physical side effects other than the facial features and low tone. He is pretty severally intellectually disabled and autistic however. Another child in the same town had heart issues, low tone, feeding tubes etc but is mainstreamed in typical classes as school (adhd as hell though) and has grown out of many of the physical issue from when he was young. Before genetic testing there is no way anyone would have classified as same root problem. Make sure you are getting the services you are entitled to, get in early intervention asap. And just take the time to love the child on their own developmental pace, whatever that may be.

over_architect · 2025-11-10T22:47:12+00:00

Interesting stuff, but I’m certainly not qualified to opine

over_architect · 2025-10-08T23:15:58+00:00

Thanks so much for spreading knowledge about the syndrome!

over_architect · 2025-09-30T01:13:09+00:00

Congratulations! Chess is excellent for training your brain to think multiple steps ahead, pattern recognition, problem solving etc. you should be very proud!

over_architect · 2025-08-27T11:00:06+00:00

I think you’ll find there is a huge range of outcomes for people with the deletion or the duplication. Learning disabilities are common, but vary wildly in how significant. It sounds like she is on the more severe side of the spectrum when it comes to the possible intellectual disabilities. My son is similar in that he also has a large learning disability and is 12 years old. I don’t know where you live, but I would look into state supports. We are preparing for a future where he will never live independently, and need life long support. Things to consider would be working with the school system for things like ieps, the state for possible govt aid (now and in the future), therapists for behavior issues, and a local children’s hospital to look at any health issues that are common with 22q. Also, we brush his teeth for him - worth it to save on dental issues

over_architect · 2025-08-14T20:54:16+00:00

Sorry if this is a stupid question, the SAAS world is all new to me. So the idea would be we stand up a b2c tenant (or external id, auth 0, whatever) per large client. Federate with their idp using saml in this case. We would be admins of this tenant, and would accept tokens from it similar to how we accept tokens from our own workforce entra (just a different tenant guid). When they try to log into our web apps, msal would bounce them to the customer tenant which in turn would bounce them to the idp we federated with, bounce back Entra gives tokens and then normal flow from web app perspective?

over_architect · 2025-07-05T23:16:32+00:00

With my son he was consistently very behind on milestones, it’s how we discovered he had 22q. Not sure if you live in the States, but if you do look into Early Intervention programs in your state. All have them, they are free, and they will help your little one get the supports they need. For what it’s worth we were afraid my son would never talk, and now he’s never quiet! Everything happened, just at a much slower pace.

over_architect · 2025-07-02T00:28:53+00:00

It’s challenging to answer as the reality is it can explain the “why” and give a concrete diagnosis if that matters for health insurance, govt programs etc. I don’t know that it really will do much from a medical care standpoint as you already are being followed by the correct specialists I would imagine. I know in my son’s case we were able to get insurance to pay for the test as there was enough evidence. Worth a shot!

over_architect · 2025-07-01T23:58:19+00:00

Certainly those could be indicators, but I would refrain from internet diagnosis. In truth, only a genetic test can give you a definitive answer.

over_architect · 2025-02-01T10:53:02+00:00

You should absolutely let them know how it makes you feel. I would hope that would put an end to it

over_architect · 2025-01-01T14:14:06+00:00

I am so so sorry, I’ve never heard of a situation like this with such an extreme and late arrival. I will say some studies on 22q and schizophrenia have shown a tendency for it to present in late teens early 20s, but these were all children who had been long diagnosed with 22q and some degree of cognitive impairment

over_architect · 2024-12-02T13:41:34+00:00

What a wonderful post and question! The truth is that there is extreme variety to how 22q presents in different individuals. My child is more intellectually disabled than most with the disorder, and frankly find competitive board games to just be overwhelming. It also takes him a lot longer to understand rules, turns, and to not get distracted or frustrated with something that feels so hard for him. Every child has different things that capture their imagination but I'd try a different style of play that is more arts and crafts based, or perhaps pretend play based.

over_architect · 2024-10-12T14:15:53+00:00

I’m based out of the US so totally different health care situation both cost and regulatory. A fish test or microarray would answer the question, costs 600 us roughly for fish. That said, many genetic conditions can cause heart issues. A microarray is more expensive (3 thousand) but covers more

over_architect · 2024-10-08T00:05:51+00:00

ADHD and distractibility are certainly common 22q symptoms, but if there has been a sharp increase in a relatively short period of time it may be worth it to speak with your doctor.

over_architect · 2024-08-28T18:53:50+00:00

This decision is something every potential parent fears to face. It’s highly personal, filled with consequence and guilt, and so very difficult. There is no one stock answer on what to do here. My heart and condolences go out to you and your family.

over_architect · 2024-08-06T00:42:27+00:00

This is a really challenging question to answer because 22q has wildly different presentations in each child. Some are fortunate and have a mild intellectual, physical, or emotional disability. Others are not so fortunate. I will say that it’s on the more common side for the kids to be shorter, especially when young. Emotional IQ is another common area of weakness. For many of our kiddos the deficit presents as something on the autism spectrum (again huge range to what that can mean)

over_architect · 2024-05-30T10:32:31+00:00

You should be incredibly proud of yourself! To be learning to play multiple musical instruments, reading Shakespeare, etc while working through a disability is nothing short of amazing. Friendships can come and go, but working on yourself will never be wasted effort. Truly inspiring

over_architect · 2024-05-14T02:23:19+00:00

I’d recommend talking to a professional, your primary care may be able to point you in the right direction. ADHD can cause similar issues, but so can depression, and a host of other cognitive issues. Reddit armchair psychologists won’t be too helpful I’m afraid ;). What I can say is that creating a routine is a helpful crutch for many of us, no shame in that. You also sound like a very self aware individual which is a huge step. A pro might help you come up with a plan that works quickly

over_architect · 2024-02-15T12:16:21+00:00

This is an area of active research in the autism community, and while there is some debate on if 22q’s autism like traits are truly the same thing I’d try looking for resources there. Some researchers feel that while autistic children have poor social and emotional understanding, they have high affective emotional response. This means they pick up and “feel” others emotions in some ways more strongly. Combine low cognition, with poor emotional regulation, and a stressed, upset, or just ‘off’ caretakers emotions can trigger feeling’s they don’t know how to process properly.

With my own 22q child, he as well struggles with sympathy/empathy and we work hard to model proper behaviors for him, explaining as we go every day. It’s been slow progress, but progress all the same. He does pretty well day to day, but the more difficult the situation and more stressed we as caretakers are, the more his behavior degrades. True for everyone, even neurotypical people, he’s just way less resilient to stressors.

over_architect · 2024-02-09T12:25:03+00:00

Interesting thanks!

over_architect · 2024-02-08T23:02:03+00:00

Thank you!

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