Family members diagnosed as adults

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Emu Egg
Emu Egg

Joined: 21 Oct 2022
Gender: Female
Posts: 1
Location: Yorkshire, UK

21 Oct 2022, 1:40 pm

HI there. I'm new to the website/forum and live in the UK.
My son, who is 25, has just been diagnosed and its come as a surprise to all of us (he is high functioning). I'd love to talk to other parents who have children who were diagnosed with ASD as adults, for some moral support and advice. All the services and groups I can find in the UK are for parents whose children were diagnosed whilst at school. There are different issues when someone has grown up thinking they are neurotypical and then discover they are not. My son is reluctant to engage with the diagnosis or access any services as he is resistant to thinking of himself as having ASD/Aspergers - but he does need help. He has returned home to live with us now and its stressful for everyone.


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Joined: 22 Feb 2008
Gender: Female
Posts: 13,537
Location: Northern California

21 Oct 2022, 7:44 pm

I will say right off that I am not in your situation, but I do have some questions and notes that I hope will end up being helpful.

Wouldn't your son have voluntarily entered this process? My son's girlfriend is trying to get diagnosed as an adult and the process, here in the USA at least, has been driven solely by her.

The reason I'm asking is because if he drove the process, he had a reason, and focusing on that reason should help him accept the results.

Regardless of what age one receives a label, it is important to remember that a label doesn't define a person. The person doesn't change. What a label does is give you keys to finding answers and protocols for specific questions. A label is only worth what it can do for the person it is intended to serve. In our family, it helped me know how to parent my son. For my son, it helped him understand that he wasn't "weird" or "deficient," but that he had a brain that worked a little different, meaning he would experience the world a little differently, and would need to approach many things differently than his peers. Both my son and I found it very freeing: we could shut out the drone of advice everyone has and focus on what works for him. As an adult, he still does that: ignores what is "normal" and decides what works for him.

I do think it is normal at any age to need to grieve, in a sense, a vision one had before and now realizes they need to let go of. It can be helpful to recognize it as grief and allow oneself to go through the grief process as a way of dealing with it. If someone with executive dysfunction issues has always held the vision of "if only I can do X, it will all change," it is challenging to accept that no, it won't change. You have to adapt and workaround. That isn't the greatest example, but it wouldn't surprise me if there was a long held dream or vision that your son is now realizing is probably impossible, and that he should find different dreams and visions. That is a whole lot easier to do at 7 than in one's twenties, so allow some time to mourn the loss of the dream or vision.

Once he's gone through the process of grief over what isn't, he'll be in a better place to grab onto what is. ASD tends to come with burdens, yes, but also GIFTS. My son cannot imagine a life without the gifts he knows are directly related to his ASD. The gifts can be harnessed and channeled in pursuit of new dreams and visions that, long run, your son is likely to find much more fulfilling than ones he may have formed in the past.

Nothing about the process is easy. I watch my son's girlfriend really struggle to let go of expectations for herself that she has deeply ingrained over the years, but that are, ultimately, incredibly self-destructive. She knows intellectually at this point that these patterns are destructive for her, but they remain what she knows, and she clings. But she is also finding a lot of joy in learning to surrender more to her real self, to believe she should follow her interests and talents to where they lead her, instead of fighting them in a fruitless pursuit to fit in with everyone else. She isn't everyone else. My son isn't everyone else. They are both incredibly bright lights wherever they go, easy for people to be around, full of talents and ideas. But they do have to structure their lives to avoid situations that are overload their senses, watch their stress levels, and realize they probably will never be able to change course on a dime. If affects the jobs they choose, and how they plan their days. It always will.

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).


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Joined: 25 Oct 2013
Gender: Male
Posts: 955

23 Oct 2022, 6:22 am

The opinion of a "professional" (ie diagnosis) is not always helpful. Labels seldom help a situation. It might be more comfortable for your son to think in terms of particular characteristics. For example, if he has anxieties, addressing those concerns might be more helpful.

He might even be encouraged to ask questions on Wrong Planet in regard to particular concerns. I have always thought of Aspergers as a neurological variant resulting from a neurological configuration that is faster, more complex, or more sensitive. As a variant, i am not inclined to call it a "disorder".

That one faces some distinct challenges does not to me seen too much different than those faced by the very tall or short or fat or thin.

The solution may not lie in getting a label and be pigeon-holed. Rather, it should be to identify those areas of life where skill development or situational management can make life better. He should be able to identify any areas of difficulty and be encouraged to explore options to improve.