Hello, folks, and happy #MummyMonday! Today it is back to school for my daughters and back in routine for our family after what I can only describe as a flat Christmas holiday. My daughters enjoyed their time off and thatâs the main thing, but my husband and I have struggled.
Letâs explore together how we navigate spiralling mental health in middle aged men, especially when they are late-diagnosed autistic and struggling to manage in a world thatâs not set up to help them.
How to Care for Your Husband and his Spiralling Mental Health
My Husband is Autistic
My husband was diagnosed autistic in summer 2024 at the age of 42. He has struggled for his entire adult life, and I should know because Iâve been there with him. We got together when we were eighteen and despite attending separate universities hundreds of miles apart, we have mostly been around each other during that time. And yet, I never recognised his differences until we were married and had children.
I suppose my first major red flag was the way he responded when I got pregnant. He ran away and hid, metaphorically. I mean, he attended all the appointments that I required him to, he was there for the birth, he took paternity leave, but emotionally he disappeared. It was a hard lesson for me, and one that I had to relearn two years later when I had our second child. I felt completely alone and am basically a single parent.
Struggling to Cope with Work
Throughout our marriage we have struggled to maintain work-life balance. My husband is very much involved in his career to the point where he refuses to take annual leave, he doesnât allow time off for medical appointments, he will do everything to make life more difficult for himself and his family. And I know he doesnât do it intentionally. He cares too much about a business that doesnât belong to him and a company that probably doesnât value him like we do. But now he is stuck.
My husband is experiencing a big change of routine and a change of environment in the workplace, and he is losing control. He hates that. Everything is changing and he canât do anything to stop it. And that means he is grumpy and irritable at home, he is exhausted all the time from putting in the hours and the energy at work, and he has no interest in life. I am seriously worried about it. But we have no help.
The NHS is Useless for Mental Health Support
It took about three years for my husband to receive his autism assessment once I managed to get him to our GP and request a referral. It took me ten years to get him to that point, and only after we had separated for a year, and I had to involve his mother in the process of reconciliation. We are still working on our marriage because it was badly damaged, and I donât think it was ever healthy to begin with. We are at the mercy of the NHS for support, and they are not forthcoming. We are in limbo.
My husband was advised to seek a diagnosis of ADHD alongside being autistic, and he was told that he may have dyspraxia. I had to Google that one! He then had to return to his GP and request a referral for the ADHD diagnosis, but the NHS do not test for dyspraxia so that would be a private referral. Heâs not ready to consider that one yet so we leave it hanging in the background.
For his referral for ADHD testing, he must fill out more online tick box forms, and he really struggles with personal admin tasks. I canât do it for him because I am not his medical proxy, and he would need to visit our GP surgery and give his written consent. Since he works during all the time that the surgery is open and he refuses to take time off work for anything, you can see my frustration with the system.
Marital Counselling and Other Therapy Options
And then we broach the subject of therapy. We paid for private marital counselling for almost three years when our children were young, and it almost bankrupted us. We just about survived the process but eventually our counsellor reached the limit of what they could do to help, and they ended our sessions. My husband was not doing what we needed him to do, and now I understand why. This was way before I began to suspect he was autistic so at the time I assumed he just didnât care enough about me and about our family. I was wrong. He cares very deeply, but he shows it in different ways.
My husband was advised to seek Dialectical Behaviour Therapy (DBT) by the professionals that diagnosed his autistic condition. Since then, he has waited for official confirmation that never came, he and I have chased both our GP surgery and the external company that provided the diagnosis, and he had to fill out more online forms and set up a video call meeting with someone that was supposed to help. They told him that he will be redirected to where he needs and now, we are waiting again.
We are Lost and Alone
The NHS is completely useless, and my autistic husband is left to research and chase possible therapy options, all the while working a middle-management full-time job with all its baggage. He earns the wage that pays the bills, and my job situation is a whole other story. Suffice to say that he cannot afford to quit his job or take time off sick. We do not qualify for any benefit support. Anything we do, we fund independently.
So, there we are, lost and alone. I am working hard as an unpaid carer who is now navigating the SEN referral route for our daughters through school. One of them has an undiagnosed eating disorder and the other is possibly autistic like her dad, but I canât be sure. I am waiting for appointments and that can take around fifteen months. In the meantime, I am struggling as I try to care for my family. Deep, healing breath!
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I’m so sorry to hear about your struggles, Catherine. Autism is in our family too. Many will empathise with you, and while you wait for NHS appointments there will be support groups that you can try, with other people who share these experiences. It was good to meet you in person at the Coventry Book Spectacular at the Belgrade Theatre. I do hope you find genuine hope and help soon – and a miracle in the NHS!
Sheila.
Thanks Sheila! The groups we have been directed to are not convenient for us unfortunately but we will keep looking. My challenge comes in getting my husband away from work for long enough to interact with other people. It was lovely to meet you in Coventry too đ
I’m so sorry to hear this. It’s terrible that it’s so hard to get help for these conditions.
Thank you. I know there are many more people in similar situations that feel equally helpless. All we can do is muddle through.
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