Autism and MS

By Sascha

1 min read

I started not feeling physically well about 20 years ago. It was put down to a diagnosis of ME. I never fully agreed with it and advocated for an MRI scan to rule out MS to no avail. Fast forward 14 years, it was a particularly hot summer and my symptoms took a major dip and I was bed-bound for weeks. Luckily a newly qualified enthusiastic GP saw me as my usual GP was off sick.

My hunch was confirmed

She suggested getting me an MRI to rule out MS, which confirmed I did have MS. I am now diagnosed with both illnesses but I don’t think I have ME. I think it was arguably MS all along. Anyway before feeling sick in the first place, I had undiagnosed high functioning Autism and CPSD from 2 abusive relationships that lasted over decades. I am now considering how my background may have contributed to my MS diagnosis as living with now diagnosed Autism is hard enough but navigating 2 tough relationships with undiagnosed Autism brings a chronic amount of stress upon my immune system over the years.

Sometimes we all need a little compassion

I now feel that all these contributing mental health battles have been a perfect storm. I am now managing my stress in much more productive ways although stress is still alive daily especially as a recent medic noted that having Autism and dealing with an unpredictable illness like MS must be like a full circle of stress. I think about that now every time I have a bad day. This one understanding comment has been a pivotal point in being able to treat myself with self-compassion and kindness. Thank you for taking the time to read any thoughts will be genuinely appreciated.

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Andy. Member
Stay strong one day at a time 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Andy." user-id="4717015"/> thanks for sharing your encouragement to this community. It's such a reminder that we're all in this together and have an invisible army along side us at all times. I hope you're feeling the support as well. Best, Alene, moderator
Erin Rush Community Admin
I'm so glad you took the time to share part of your story with the <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> communitt, <inline-mention username="Sascha" user-id="8799754"/>! I am sorry you are dealing with two diagnoses and CPSD. That's definitely a lot to manage all at once! Are you receiving counseling and support for your CPSD? How about your autism? I have loved ones with autism and I know how hard it can be to navigate in a world that is created for neurotypical people. And getting diagnosed with autism later in life, while somewhat relieving (you finally know why you are how you are), the years lost when you could have had support, understanding, and a diagnosis can be frustrating. You may need a safe place to unpack those feelings, especially in the wake of two emotionally damaging relationships. There have been studies that show major life stress can bring on the first flare of MS. The stress could be due to what the body perceives as physical trauma (a accident or injury, prolonged severe illness, etc) or emotional stress (which also affects the phyiscal body). So, it stands to reason that the stressors in your life triggered that first bout of MS. The working theory in the medical community seems to be that some people have a predisposition to MS (we're still learning the whys of this) and sometimes, their body is triggered into an overreactive immune response and it 'awakens' the MS, if that makes sense. So what you're sharing about your diagnosis makes sense in light of our understanding of MS and how it is triggered. For future reference, here's a compliation of community members' top MS triggers and how they manage them -- <a href='https://multiplesclerosis.net/living-with-ms/stress-management;' target='_blank'>https://multiplesclerosis.net/living-with-ms/stress-management;</a> . Again, I am glad you shared here and I look forward to seeing you around the community. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
EmmaRenee19 Member
My story is similar. My diagnosis of Autism came a few years after my MS diagnosis. Thank you so much for sharing. There is some sense of comfort in just simply knowing that there are others out there like me, who share my experience, who understand. Maybe that's messed up? 
1. Therry Neilsen Moderator & Contributor
 <inline-mention username="Erin Rush" user-id="3987334"/> and EmmaRenee19, what I think is messed up is that it is so hard for medical/psychological professionals to recognize neurodivergence in women. I am 76 years old, and my neurologist has just started treating me for ADD. Looking back over years of lost keys, lost phones, and acute RSD, I wonder why I was not recognized and treated earlier. Certainly going on Adderall has been a gamechanger for me. A friend who is 60 was just recognized as on the Autism spectrum. Why is this taking so long for medical professionals to recognize neurodivergence in women and girls? Do they think we are not worthy of help? Do they think we can just suck it up like all the other hard to diagnose problems we just suck up? EmmaRenee19, you are not alone, and even if you were somehow UNIQUE, there are loving people in this community who would welcome you a nd support you. You're human like the rest of us, and nothing that affects you is foreign to us. we are in this together, and I am glad you're here. Therry, a Team Member 
2. EmmaRenee19 Member
 <inline-mention username="Therry Neilsen" user-id="4095618"/> and Erin Rush, thank you for the kind words of support! Erin, I feel the same way. To me being on the spectrum is just part of who I am. I don't view it as detrimental at all. It's just a difference in the way I process the world around me, which isn't worse or better than any other experience, if that makes sense. It's just different. 😀 Therry, I am happy to hear that Adderall has helped you. My partner is in her 50's and was just recently diagnosed with ADHD. The medication has been a real game changer for her also.
Sascha Member
Hard int it. All I know is the stress of living with undiagnosed autism as been a huge factor in development of MS. Let me know if I can help support you.
1. Erin Rush Community Admin
 <inline-mention username="Sascha" user-id="8799754"/>, that's the truth! I wish we would get better at diagnosing Autism (and teaching about how different Autism can look than what we see in media) much earlier! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
2. CommunityMember3f1950 Member
 <inline-mention username="Sascha" user-id="8799754"/> How would I go about getting evaluated at 37 years old and a woman with MS for Autism. My 8 year old son is in the spectrum and after the last 6 years of research on the topic, I am definitely
Happytxgrl Member
Good evening. I just wanted to let people know that I have an appointment with a new neurologist tomorrow. I'm hoping for better results than I had with the last doctor. All I ask is if you can take a few minutes out of your day, please pray that I get the help that I need. I've been having symptoms for over a year now and no doctor seems to know what to do to stop them or at least slow it down. I'm going to let ya know what happens. Thanks again 
1. Erin Rush Community Admin
 <inline-mention username="Happytxgrl" user-id="8852481"/>, yay! That's great news! I really hope your upcoming appointment is fruitful and that you really click with the neurologist, if that makes sense! Sending all the good vibes you way! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.

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