Hello, I am new to this blog. My daughter Cathy, who is almost 18 is Schizoaffective & Autistic. She was diagnosed with Autism age 9 and Schizoaffective last year. Its been a challenge to find the right medication for her. It has been a challenging 2 years for her and all our family. Been trying to find the right psychiatrist for her but unfortunately where we live not many options. Resources are very limited. She has a great psychologist she has been seeing for 8 yrs now. I realize we are not alone and their is many families that are experiencing what we are. Just wanted to say Hi! -Tina.
Hello Tina, I am diagnosed with schizophrenia and autism. However, my diagnosis of autism came at the age of 28, so that means my autism did not interfere significantly with my daily life and is relatively mild. Technically my diagnosis is aspergers but that is included with autism now.
Welcome Tina! This forum is an excellent resource for support and information. We are glad you are here.
Thank you for reaching out💜
I have an idea that SZ and autism combined has its own unique challenges. Thank you for sharing with us! Would you mind sharing some additional information about what has worked well for you, or any other suggestions? I know of a few people that have similar situations.
Despite my autism being relatively mild, I have significantly different ways of thinking than a person with schizophrenia. I feel even most people with just schizophrenia manage to get into romantic relationships or friendships with others much more easily than me. Personally, no therapy helped me as much as medications. However, a psychologist recommended dialectical behavioural therapy for people with autism like me. Not sure how it really works as I never did it. It is unfortunate that sometimes autism is associated with intellectual disabilities also, so that makes teaching them new things much more difficult. I personally do not have any problems with my intelligence. Cognitive behavioural therapy for psychosis will also help people with schizophrenia in dealing with their delusions and hallucinations. I also never do drugs or alcohol. I know many schizophrenics who are stuck in a vicious cycle that when they suffer some setback in life, they will turn to drugs and alcohol. This in turn makes them even worse as it triggers their psychosis and end up being in hospital.
I personally used to meditate every day and it helped me control my anger, anxiety, etc. It rewired my brain so I became much more calm and understanding of others. Meditation isn’t easy but it has so many other benefits such as improved cognitive abilities in the form of focus, concentration and memory. An ordinary person with no disabilities will also benefit immensely from taking time out each day to meditate.
I think getting a job has also be immensely empowering. As my psychiatrist always says, that I should slowly build upon small successes and eventually I can move on to do other things. I really think my life is so much better now that I am working and feel successful myself. Some people might think I am bragging but I honestly never gave up despite failing school and work many times in the past 9 years since my diagnosis. If you read the book called Grit by Angela Duckworth, she says the greatest predictor of success is passion and perseverance. The people who are immensely successful in life all persevered through hardships. I don’t have it easier than anyone with schizophrenia, in fact I had hallucinations and delusions as recently as about two months ago, but I still worked. I never gave up despite failing many times and my psychiatrist told me he uses me as an example for many of his patients.
You are a beacon and I am going to get that book and then pass it on to my son!
Thank you ,I feel a lot better knowing that I have this forum to turn to and seek advice or simply just a shoulder.
Thank you for sharing and all the insight. I feel better that I have somewhere to turn to if need be and that we are understood. This has been really hard on all of us as a family not knowing what to do or what to say to help Cathy. Meds, doctors, etc… She has yet to have some relief, she is still not feeling any better. Voices are louder than usual. Shes taking Seroquel now. Started that one a week ago after not doing well on the Vraylar. If you have any insight on meds or what worked for you, I would really appreciate it. I will definitely get the book! Thank you so very much! -Tina
You sound like an incredibly strong person! Love everything you said about meditation, mindfullness and the power of getting a job. All of those things lead to self reliance and confidence. And YES I have heard of Grit. Clearly you are very intelligent and you write very well. Have you thought about writing a book and sharing your story with others? Rebecca
Welcome Tina. It’s nice to meet you. My name is Rebecca. I have a mom with SZ and she’s had it for over 55 years. She is an amazing lady and very strong. She is my biggest teacher and cheerleader in life. I’m on this forum to help others know there is hope. So welcome and know there is hope for Cathy. Yes, it must feel challenging having the dual diagnosis of SZ and Autism. My heart goes out to you. I’m so glad she has a good doctor. Make sure you take care of yourself while you take care of your adult daughter. The road to finding the right med combination can be a long and windy one. Hang in there and know you have a community here to support you and help you along the way. Blessings!
I take two anti-psychotics. I take Latuda and Ziprasidone and also an anti-depressant for Cipralex for my anxiety. Everyone reacts differently on different medications, so what works for me might not work for your daughter. I take two anti-psychotics because Latuda isn’t strong enough by itself, so as an adjunctive therapy, Ziprasidone is added. If your current psychiatrist isn’t able to get your daughter better after a period of time, you might want to consider switching psychiatrists. My old psychiatrist was not very capable and gave me mood stabilizers because he thought I was bipolar. My current psychiatrist is a lot better and really gave me my life back.
I really think mindfulness meditation will help your daughter. Voices are kind of like physical pain in my opinion. There are a lot of people who suffer from physical disabilities and are constantly in pain, but they practice mindfulness meditation to help them alleviate it. It is one thing to have pain or voices, but another to let them make you feel worse or gain control of you. Cognitive Behavioural Therapy for psychosis will help your daughter in combating delusions and other paranoid hallucinations.
Hello Mrsbigsky, thanks for the kind words. I wrote an article on my linkedin back on November 2018 regarding my schizophrenia and how I was treated at my bank by my managers and colleagues. It was very well received and I received many words of encouragement from my colleagues at the bank. It was also read by many senior executives at the bank and I was actually invited to speak at two separate conferences on October 2019 at two separate departments. However, I was sick with my depression and wasn’t able to attend both of those. I felt that society is really moving in the right direction especially with mental illnesses and that the stigma with mental illnesses has gone down significantly the past few years. In fact, I just attended a virtual mental health event at my company on Thursday.
I definitely intend to continue to help lower the stigma and discrimination against people with schizophrenia as much as possible. I had also written to the Schizophrenia Society of Ontario to become part of their speaker’s bureau that would participate in various events for the Society.
Thank you so very much Rebecca. What an inspiration your mom is. I love Cathy with my whole being, I try to be strong for her everyday but sometimes I’m weak. Then I realize what it must take for her to get up everyday and deal with everything she has been dealing with. I get my strength back, because of her. I didn’t add it in my first comment but she is Intellectually Disabled and has Trichotillomania (a hair pulling disorder since she was 2). Her dr always says Cathy is one tough gal! So the passed year she’s had it worse than ever since the Schizoaffective unraveled her life, that was already challenging. But she’s here and trying hard to have a life. She loves history, Fleetwood Mac, Movies, and So many other things! Thank you for your support and guidance. -Tina
Thank You Lirik for all the insight, it really is a guide for me. You are so strong. It gives me so much hope reading your story and how successful you are. I will start the meditation with Cathy immediately. We have tried to do it before but she refused to do it. I’ve read to her what you wrote, seems like she’s willing to try now. So THANK YOU! Currently looking for a Psychiatrist in San Antonio. It’s 4 hours away, but I feel we’ll get the best help there. My husband and I are willing to travel, whatever it takes to help Cathy.
Thank You again, I hope to keep in touch. Cathy will be 18 in August so We’re taking legal measures to be her guardians. -Tina
Wow! You are such an inspiration! I’m glad your colleagues and managers see the value and strength in your message. You have the power to help many people. I agree- we as a society need to help lower the stigma and create awareness. Through awareness comes change and change creates hope and a new way of life. God bless you on your journey!
I have felt weak so many times while trying my best to take care of my mom. It isn’t that you’re weak- its the nature of the beast. Cathy sounds like a wonderful young lady with many wonderful interests. I pray she finds comfort in her daily life and routine to rise about her challenges. Take care of you too so you can be there for her. She needs you and you sound like an amazing mom. Happy Mother’s Day!
Welcome. I have schizophrenia and mild autism
It is worth researching the differences in autism for those with co existing schizophrenia
There is a hybrid type of what used to be called Asperges specifically to schizophrenia
For me it counts as things like a bit less reserved socially
I have quite a great need for social contact even in groups like in a class situation
Although I still get completely freaked out sometimes when a third person comes in the room and can only do 1-1 communication usually…
sorry to ramble
Hello, I am with my son who is 22 figure out his diagnosis. Seems like he maybe somewhat in the same category as you however every time he starts to get a normal groove he breaks down. He has a major breakdown this past August. He has always been focused on teaching him self things but this time it wet down a dark road of a type of cult. He would ask if we were his real parents etc. Anyway, he was hospitalized for a week or so by our commiting him then a secondary place for a month to no avail, They were saying bi-polar. He hates medicine and drugs. He was recently trying to get energy from the sun and feels lately as he describes shocks happening. He is a terrible sleeper always has been. He believes that the 5g towers are sending out radiation and affecting him and causing major pain and he is scared. We took him into hospital but they wont admit him and said to follow up with a dr. hours later he went back him self only to be released. We are trying to get a direction to go in and hoping he calls and gets it. He had migraines as a teen or what we thought missed a couple years only to go back to graduate high school with everyone get into a a great college only to have it all crumble as he doesnt believe in institutional teachings. Any thoughts as of late he started studying new things having to do with binereal beats and also thinks he unlocked and kundalini process. We are exhausted as the hospitals all wont admit him and we are trying to get hi into doctor it is hard at 22. He lives with roomates and they have contacted us a few times in last month of their concern. Just wanting to start hearing others stories to see if any simularities.
Thank you for reaching out. We are trying to get another opinion concerning meds and therapies. Which she has had since age 4. I thought I was doing ok until schizoaffective came her way. I tell her 1 day at a time, you’re strong , we got this! And I know we will get her to a good place, but when?! I hope she can function where you are and be independent. As much as she can be.
Thank You, -Tina