A lost parent and a lost child.

Hi All, 

Its taken me a long while to get here and summon up the courage to reach out to others experiencing similar issues. My son is 14 and after 11 years of going through various assessments, a break for COVID and a change of school to get help with an ECHP we finally got a diagnosis earlier this year. To say it was a relief is an understatement but now we have a diagnosis it feels like we have been cut off from any further advise or guidance and to be quite honest we are now back to square one, albeit a different square one but square one nonetheless.

Although we only got an official diagnosis this year, we have been given various advice over the years by so called experts of how to engage with our son to make every day things go as smoothly as possible for him and the rest of the family but it is hard and very little appears to help and to be quite honest most weeks end up in a shouting match between family members usually brought on by the smallest of things and usually stoked by one of his frustrations at something we haven't done properly or explained correctly or, and this may just be a teenage thing, something he just doesn't want to do. On top of his frustrations with us there are obviously our frustrations which also spill out on occassion (although usually between parents). We have got through so many years like this and i have to admit i fear it is now having a long term impact of our son's mental health as well as other members of our family. We have stopped really spending any time together as a whole family because its safer and less stressful to take extended "chill out time". My wife and I both feel like bad parents because of this head in the sand approach but at the moment it really does feel like the safest approach to avoid another eruption of emotion from any one of us. To make matters more difficult, our son has got to the very frustrating stage of constantly lying about things and even when called out on it he tries to stay in the lie and makes things worse. As noted before I know this is not unheard of in teenage boys, or any children for that matter, but it is so frustrating and offers up otherwise unnecessary conflict and it is just constant.

Reading this back I am conscious that I may come across as a selfish parent that is just seeking a one size fits all answer and believe me i understand that this is not available but does anyone have any advise on getting through a day or a week without feeling like a failure. We are incredibly proud of everything our son has done to get to where he is now, but I feel we struggle to show it because even after 11 years of professional advice and consultation we just don't feel like we have any viable experience or valuable knowledge to help us through.

Thanks all in advance even for just reading.

  • As a parent, I can tell you our children are our best / worst critics. But I believe it is absolutely of grave importance we allow them to help us grow, so we can help them grow. 

    Ideally, that moment I embrace my humanity, suddenly I'm OK with being flawed and feel even more self-accepting. This may be the mark of a spiritual journey, but it's also unavoidable and something to face early or it will stare us down in our twilight years. Then the criticism from a child doesn't feel offensive, as if they're our opposition, but I begin to  hear the desperation in their desire to look up to me. The desire to connect, the desire to be seen and heard and understood. I'd start here. 

    But also recognise that Autistics can thrive with a great deal more quality uninterrupted introverted time than most. Breathing space, being afforded agency to exit before things get out of hand, room to think without demand of a response. I'm a mother to a dyslexic son and I'm autistic. I cannot access words when stressed. And sometimes I cannot give an answer to a thing for a few years past the demand. Unresolved matters are somewhat torture. 

    Now, when young, my father, who I'm a bit more similar to, would do a thing I didn't want to do with me. This is crucial. Because of executive function differences, we might not recollect the order of putting things away or doing the dishes. And there is an order to everything. We may need to be told on repeat how best a thing is done. This isn't a fault of anyone, society may say "I shouldn't have to tell you again" (here also, offended by the other), but wisdom takes no offence at this kind gesture of patience. And what does it matter? Fostering connexion and always building trust is far more important than anything else. 

    But there's much here you've expressed which is too ambiguous to really give advice on. Autistics lie as a survival mechanism, when we feel trapped. So, perhaps if you have specifics on this matter we can offer help. The best I can say is practice saying "how can I help" or "help me help you" or even "sorry, I want to do better and I'm still learning". These small responsible phrases can change the whole house into something peaceful. Everything is mendable. Better to look at problems as Escape Rooms or something to Troubleshoot rather than an end in themselves. 

    Autistic frustration is compounded by sense perceptions being too real and therefore, everything feeling far more intense PLUS the difficulty accessing the vocabulary to name or identify the struggle or communicate a process. Our motives can be entirely polarised from our peers, as we tend to not quite understand social hierarchy or the need to dominate and often we're never allowed the time to sink into a focused state with things we might someday excel with - this is how we learn best, we need time. Interruptions are kryptonite. And even more so if that interruption is my own brain not doing a thing I wish it would do. We need one-thing-at-a-time. Because the world around is already Everything-all-at-once.