
I always said my kids differed like day and night. My daughter was the sun, my son, the moon. It was so easy to raise my daughter, while every day with my son was difficult. He had uncontrollable anger attacks, wanted everything to happen in the same way, could totally fixate on one subject to the point where it drove you crazy, and sometimes would just stare at you or the wall as if he had totally zoned out of life.
If only we had known more about autism and schizophrenia when he was much younger.
Autism is a neurodevelopmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behavior. Parents often notice signs during the first three years of their child’s life. — Wikipedia
Schizophrenia is a mental disorder characterized by continuous or relapsing episodes of psychosis. Major symptoms include hallucinations (typically hearing voices), delusions, paranoia, and disorganized thinking. Other symptoms include social withdrawal, decreased emotional expression, and apathy. Symptoms typically come on gradually, begin in young adulthood, and in many cases never resolve. There is no objective diagnostic test; the diagnosis is used to describe observed behavior that may stem from numerous different causes. — Wikipedia
A comment on an article, The Firstborn Child, inspired me to write this article. Solomon — the commenter — and I struck up a conversation, and my heart broke for that young man, living in a country where he couldn’t get the care he so clearly needed. It certainly rubbed my nose in my own privileged position.
I wanted nothing more than to help Solomon, despite knowing I couldn’t.
I don’t see myself as an expert in this area. I only witnessed both these ‘conditions’, as my son received the diagnosis of autism and there’s a strong suspicion he also has schizophrenia.
A short-ish version of my son’s journey
My son has always differed from my daughter. Quieter. Keeping to himself. Only one best-ish friend. Focusing on one thing and wanting to know everything about it. Always doing things the same way, and being upset when those things changed.
The puzzle pieces only fell into place when he received the diagnosis in 2006: you are on the autism spectrum. Only then I realized him clapping in his hands with glee since he was a toddler was a sign of autism. Or, him being ‘different’ from other kids his age — and being bullied — should have been a sign. However, there was too little knowledge about autism in the nineties, or even in those first years of the 2000s.
When he was eight years old, he went through a series of tests. Not for autism, though. No, he was ahead of all his peers, skipping a grade and later doing two grades in one year. The results of the test showed he is highly gifted, something I wish we had never known, because then he wouldn’t have skipped classes, and he would have been more socio-emotionally stable than he is.
I think.
When he was seventeen, he started working at a supermarket. This was after he had dropped out of school because of the bullying and a mental breakdown. Thankfully, there was a manager that watched over him, and helped him to get back into school, where he completed a study way below his intellectual ability. But, at least he had that diploma! He attempted two more studies after that, but completed neither of them.
He had several spells of depression — at sixteen he had thoughts of suicide — and at 21 he had his first psychosis. At first there was him threatening me with a knife; then two weeks later he smashed a window to pieces. I almost called the police.
Bless him. He realized we were right — he needed help.
It took ten years!
Ten years for him to learn more about his autism, and how to deal with it. Ten years to being in a better place he had been for years. He was thirty-one when he moved out to assisted living, and he flourished. He was doing so well, and then he got into a relationship with an abusive, narcissistic bit… er… young woman.
That ruined him.
The relationship ended in 2021, and ever since, he’d been in much worse shape than before. Also, the schizophrenia has surfaced again.
Why schizophrenia?
The reason the autism counselor mentioned schizophrenia as part of my son’s ‘condition’ — I hate that word! — was because one day, at the end of an appointment with her, his hand on the door handle, he asked: Are hearing voices and seeing things others don’t symptoms of autism?
The counselor said it wasn’t and added she could help him get rid of the voices and visions. He said no, because then he would have nothing left; he would be alone. That triggered her into thinking (knowing?) his condition was more complex. He suffered not only from autism but also elements of schizophrenia, as she told us in a meeting we attended on invitation. She was the one deciding not to examine this further, as he already had to learn to cope with how autism limits him in the big wide world.
Seeing people and spiders
I am terrified — absolutely terrified — of spiders. Seeing one, even if dead, totally freaks me out.
My son used to see spiders.
When he was roundabout 15, one night he told us — his sister and me — he saw people. Dead people. Ghosts. He scared his sister stiff, especially since at that moment he saw someone standing on the balcony. He admitted frequently seeing people and was so serious about it. Not joking at all.
I believed him, but never questioned this. It was just one of those things that was part of him. I never thought it might be because of a neurological disorder. I regretted this in later years.
It was only after his counselor had mentioned schizophrenia that my son told us he frequently saw spiders on the walls, sometimes huge ones. I had noticed before that he sometimes looked at the wall above or to the side of me, but never knew why, until he told us this. He said the only way he knew the spiders weren’t real was by watching my reaction when I also glanced at the walls.
His situation now
The toxic relationship my son was in for a year and a half has ruined him. He’s a mess. Darkly depressed. Extreme low self-esteem. Doubting himself. Not trusting the world, people, anything. Still seeing things — more than he did in a couple of years. He’s estranged from his sister, thanks to that bi… er… lady.
He leans heavily on me, as he has no one else. His words: I only have you and my cat.
He has his counselors too, but outside of that, he really has no one. There is a work place he can go to for daytime activities, but because of his depression, it’s too much for now. With his counselors — a psychologist he sees once a week, and a coach coming to his home to help him with practical things — it was decided that he first has to get stronger before he can go to that workplace.
For months, I felt obliged to solve his problems. Gradually I understood I couldn’t. I can offer him a shoulder to cry on — literally — but he has to do the work to get better and stronger.
I need to be his mom, not his healer.
Once I realized this, it was less burdening for me, but after about twenty suicide attempts in 7 months (the last one was in May 2021 — he slept for two full days), I fear the day he might attempt it again and there will be no one around to find him.
I constantly remind him there’s light at the end of the tunnel and hope one day he will also see it. But that’s how far I go. I sometimes asked him about the counseling, but mostly wait for him to share the details he feels comfortable with.
Sometimes I contradict him when he shares things that happen in the past, but within seconds, I just nod and sort-of-agree on what he says. Why? Because his eyes get this wild look and he scowls, adamant it happened as he ‘remembers’. Then I know the ‘memories’ he has are probably things that stuck in his mind during a psychosis.
People with schizophrenia may be more likely to experience false memories. Symptoms such as hallucinations and delusions concerning things that are not real may give rise to a person believing they have experienced something when they have not.
A 2020 study using a verbal recognition memory test found that people with schizophrenia had a reduced ability to distinguish between a real memory and a false memory. While the participants did not produce more false memories, they did have trouble producing real recollections.
The reason may be that when severe delusions are present, a person may mistake them for a real-life experience or event and turn them into a memory perceived as real, reports a small 2023 study. A person may connect hallucinations and actual events, distorting what is false and reality. — Medical News Today
Sadly, psychoses are part of schizophrenia, and false memories can come from psychoses. One of those false memories is why he has no contact anymore with his sister, as he accused her of something horrible, something that never happened.
The reason for this post
I’ve been inspired to write this post because of the conversation with Solomon, but writing articles like these, one thought always dominates: if I can help one person out there by sharing this, it has been worth every second of my time.
For me, as a mom, it’s difficult to know I cannot help him. It wasn’t easy to take a step back from trying to help him; to leave that to his counselors. It’s also difficult to see my children not having contact with each other. There are days I want to just shake my son and tell him ‘snap out of it’, but of course I will never do that. He’s a troubled soul, and it’s just so damn hard to see him like that.
Still, he’s an adult, and he makes his own decisions. He cares for himself and his cat, and more or less once a month, I have lunch with him. We keep in contact, not every day, but frequently. I will always keep tabs on him, and I try my best not to worry about what would become of him if I ever leave this life.
If anyone has questions, I will answer them as well as I can, but once more, I am not an expert on autism or schizophrenia.
Also read this powerful essay by
Oh, Marie... this is heartbreaking 💔 What a horrible thing your son has to endure, all of you. I'm so sorry he ended up in an abusive relationship. You must have felt like strangling her! Terrible!
My eldest brother's partner of 30 years had schizophrenia. She'd stop taking her meds because she thought she didn't need them anymore, and all hell would break loose. What a burden she was on him, her son, and everyone else. So sad.
My heart goes out to all of you, Marie. You're a good mother by checking in. There isn't much else you can do. Sending my love and hugs. 🤍
I’m so relieved that you’re writing about this while my heart aches for you and your son.
I feel that it is beyond important to be transparent about these issues and yes, it may truly help someone who reads this.
My 🩷is with you.