My Husband’s Story: I didn’t even feel I was normal

My name is Nigel and I was diagnosed with autism at 59.

I always felt I was different right from my teenage years. It’s hard to describe but I didn’t even feel I was normal.

I hated school. It was a real struggle and so hard. I didn’t go to anything at school, clubs and such. I had no true friends. I was just different and invisible. I felt like I was always passed over. The only subjects I was remotely good at where physics and chemistry. Maths was a mystery but then I had a PE (physical education) teacher teaching me who had no idea about maths herself. I never did understand that one.

I was horrendously bullied at school. Every single day. Kids beat me up, kicked me and pushed me. All I remember about school was being black and blue from the other kids.

I think my difficulties and struggles were overlooked as I had a physically disabled sister who was number one priority in the house at all times.

I collected stamps for years and liked photography but it was frustrating as with just 50p a week what can you really collect?

After school I worked in a supermarket for years. It was just a job; somewhere to go really. I had work colleagues but no friends there either. I only left that job when I moved from Wales to Scotland to do a course. I had no idea that would be the last job I would get for many years. I can’t do forms, I detest them with a passion. I have a speech impediment which means I’m rubbish at interviews. I can do the job but few ever saw that bit.

I hate change of routine. If I do the grocery shop any day but Thursday I get so confused. I struggle to shop anywhere but Tesco as other shops are laid out differently, smell different, look different and don’t sell Tesco products. I would be wondering ‘will I like that?’ , ‘Will it be as good as the Tesco brand I know?’, ‘where is the the sell by date?’ I know where that is on the Tesco product.

If something doesn’t work in my routine I am so thrown out not just for that day but days later.

If I am geared in my mind to park in one place and there is no spaces there I can’t think of anywhere else to park so I go home. That may sound strange but it’s just how I am.

It wasn’t until my son was diagnosed with autism when he was three and I reluctantly went with my wife to a course that I started to think the course was talking about me and not my son. It was like an awakening to think maybe I actually had something that was making me different after all.

People always had the attitude ‘oh that’s just Nigel’ and would ignore me, ‘he doesn’t know anything’; people never give me any credit.

I have been depressed since my teens but no-one really thought about it. They would say ‘what do you have to be depressed about?’ I’m been on medication for 5 years now. I’m still depressed it’s just some days I have good days and others bad days.

I have two autistic children but that doesn’t mean I can help or understand them any more than my wife who is not autistic. In fact caring for them exhausts me due to my own depression and autism and the fact I have a hearing impairment.

I hate being interrupted and the children interrupt with demands, screaming and needing attention so much. It gets too much. If I cook dinner and you interrupt me by phoning I can’t concentrate to cook dinner. I just can’t.

I’m allowed to struggle. After all if I didn’t struggle with certain things in certain areas I would never have been diagnosed would I? Isn’t that the whole point of autism?

But I have a strong faith, I love my wife, I adore my kids, and I get by.

Maybe if I had been diagnosed sooner things could have been different?

I don’t know.

I just hope my children don’t struggle like I have.

I hope the world is kinder to them.

Nigel.

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I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.