This Autistic Father Proves Autism may Make You Different, but Not Less

May 8 2014 - 7:42pm
Autism Father Ian
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The gentleman that I was lucky enough to interview today has a very unique point of view when it comes to autism. He is an extremely enormous well of knowledge. He works to raise awareness for autism, a disorder very dear to both of our hearts, every day. He is a man to be respected, one to be humbled by, and he is a remarkable father and husband. Rivaled by next to none.

Some Background Information

Mr. Ian Hughes is a father of 3 living in Wolverhampton, England. He is originally from Wales. Ian’s oldest is his daughter, Jennifer, she is 24. He then has Zack, who is 8 and has autism, and Toby is his youngest at 4. He has been married to his wife, Kerri, for over a decade. Ian has led an extremely interesting life. He has worked as an Engineer, Welder, Machinist, he has ran a hotel, and he has ran exhibitions. Now he is retired and a full time, active autism advocate with several online autism support groups that he runs, including one he has ran with me and one other lady, Nunu, for the last year. Ian has the most unique view of autism that I know, not only is he raising an autistic child but he himself is autistic.

Brooke: Hello Ian! I am so glad you allowed me to do this interview with you! Your story is especially touching, pulls on my heartstrings. Let’s not get a head of ourselves though, shall we start with the basics. Tell me, Ian, what is Zack’s official diagnosis? Does he have any diagnosed co-morbid disorders?

Ian: Zack is diagnosed as moderate to severe. He also has Klinefelter Syndrome and Epilepsy, as well as a few others. He has also had cancer. [Leukemia] [Now cured]

Brooke: That is exactly what I mean. Pulls right on your heart. I cannot imagine how it felt to be in your wife and your shoes. You two are so strong. I know there must have been a million different emotions flying around, but, if you had to pick one defining emotion that you felt whenever you first heard that Zack had autism what would you say it was? Do you have a reason why?

Ian: It didn’t really affect me at all honestly! We were fighting his cancer and fighting to keep him alive at the time! The ASD was minor in comparison! So, I guess numb would have to be the closest.

Brooke: Being numb is a completely normal reaction to what your all went through. I am just glad he is OK now. I don’t mean to jump topics, but I wanted to ask, did the doctor(s) diagnose his autism right off the bat or did Zack go through several misdiagnoses?

Ian: Actually, they wondered why it took so long to ask for the diagnosis. Zack never had to be ‘assessed’! They had all known him for years and told us it was plainly obvious!

Brooke: I see, so, what age is Zack? Would you mind telling how your family dynamics are?

Ian: Zack is 9. We are still a fully functioning family unit, including younger bro! But the pressures of all of if, cancer most of all, have caused us to come close to splitting on many an occasion! Currently, we had a ‘blip’ after his latest diagnosis [epilepsy], but we are strong!

Brooke: My son has seizures too. Has had since he was a day old. No matter how long you deal with them they remain scary as can be. I can’t think of much more that is harder to deal with, I am going to ask you what’s been the hardest part about raising Zack. How have you coped with it? You could tell me a short story about it if you want

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Ian: I’d say the general lack of understanding, both from the public, from family, to a lesser extent, and Professionals! A good example is, Zack was playing in the park with a young girl he met, and I was talking to the Mum. The kids came up to us and Zack started one of his stims. The mother looked puzzled, when I explained, she grabbed her kid in her arms, sprang up and ran off, shouting over her shoulder “You fu**ing idiot! Don’t you know how catching Autism is?”! (This was one of the few times I was truly speechless!)

Brooke: That sort of ignorance drives me mad! Few people really get our life. It’s sad. Let’s try to shift gears. Umm, let’s see, why don’t you tell me what’s been the funniest thing about raising Zack? If possible tell me about it, a short story of how a family member reacted, anything.

Ian: This is funny but also sad. My Mum ‘fought’ the diagnosis for the longest time. One day she was out with him one day on a bus, when it came time he didn’t want to get off at their stop! It took 10 minutes and 3 adults! Upsetting, yes. At least my Mum ‘gets’ it now!

Brooke: Isn’t it funny how it takes actually seeing our children behave a certain way in front of them for our family members to get it, we aren’t making this stuff up! Despite a set back every now and then Zack has made a lot of progress. A lot of us parents have one thing that we accredit a large amount of our child’s success too. What would you say your one thing is? Therapy? A certain teacher?

Ian: Oh, no doubt on that one! The school Zack has attended since last September [2013]. Absolutely amazing! He has come so far in such a short space of time! It’s a private, specialist ASD boy’s school. Residential, although Zack attends as a day pupil

Brooke: The right school and teachers can make all the difference to our children. Zain’s current teacher is simply amazing. You know though, no matter how good of a school our kids attend this is still a stressful job. I’ve noticed that a lot of us have one thing that we accredit our sanity still being intact to. What would your one thing be?

Ian: Laugh! As much and as often as possible. For me personally, helping others, literally thousands, through my Facebook groups, including the one we’re both part of. Also, acting as a [trained] advocate for other parents makes me feel very good!

Brooke: I enjoy running that support group with you Ian! You are a remarkable gentleman. I’d have to say probably the largest source of autism knowledge I’ve ever encountered. No joke. Tell me, if you could give only one bit of advice to a fellow parent of a child with autism what would it be? Why?

Ian: Don’t get lost in your own self-pity and misery! Remember that the world continues on regardless and your child does have a place in it! Try and find something to at least smile at every day, preferably laugh. It’s both good ‘medicine’ and an excellent pressure release system when things are getting really bad!

Brooke: I knew you would give great advice! Thank you. In closing, I want to ask this, if anything what has raising autism taught you about yourself? Do you thank the disorder for that?

Ian: That I am Autistic myself, now diagnosed! It explains a lot! Also, it was seeing myself in my son. So yes, it was his ‘disorder’!

In Closing
I’d like to take this moment to thank Mr. Ian Hughes for allowing me to interview him and spread his story. You are one strong man with one strong wife. The things you do through your groups is astonishing. You weren’t exaggerating, you literally help thousands of people every day. Working with you in the support group has been a privilege and interviewing you has been an honor. Thank you again.

Other Autism Related Stories by Brooke Price

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Comments

So the father has Autism too? If not this sound not say Autistic father.
Never mind my last comment I misread the article.