Autism Interview #118: Jared Buck on Growing up Deaf on the Spectrum, Disability Advocacy, and Late Diagnosis

Jared Buck is a late-diagnosed college student studying History. He is also a member of the Deaf community and is passionate about disability advocacy. This week Jared discussed the lack of support he received growing up and how he has managed to find more helpful communities on the path to positive self identity and adult success.

You received a diagnosis relatively late (after the age of 30). What made you decide to pursue a diagnosis and what was that process like?

The choice to pursue such was a joint decision between myself and my mother. I had exhibited symptoms of high functioning autism all my life, but it was just attributed to ‘acting out’ (Heard that refrain a lot?). I had a bad temper during most of my basic education years, and could get rather angry and sometimes violent (not to the point of hitting someone, but to the point of throwing things around). I knew that people with some forms of autism can sometimes display such behavior without realizing what triggers it (my brain simply did not have the emotional intelligence yet as late as my freshman year of high school to grasp emotions in a logical way).

I was diagnosed in 2013 – we went to a behavioral health specialist in a nearby city that also specialized in clinical neuropsychiatry. That came as the result of a referral path from a number of different doctors. Only then did I get a proper diagnosis.

Did your deafness as a child hide or distract from autism symptoms? Or do you think your late diagnosis of autism was unrelated? 

I’m not quite sure it distracted from the symptoms in any way – when you’re autistic they will pop up even if you’re blind, deaf or have any other sort of medical condition. One of my friends from high school was later diagnosed as being autistic, and she is deaf too. Autism as far as I am aware can pop up with plenty of unrelated medical conditions. It would be interesting though to find out how many people with autism also have a medical condition completely unrelated to the autism spectrum itself.

In what ways have you received positive supports in life to help you grow into an independent, successful adult?

My parents recognized early on that I was quite intelligent (although developmentally delayed in some respects– I did not speak regularly until I was 5, and I have had poor balance and motor coordination skills all my life, which may or may not be an additional result of being deaf), so they often let me find my own way through life. I read vigorously growing up (and I still do), and that supplemented the education I received at a school for the deaf in southern California. Deaf children are taught the same way as regular hearing children – the instruction is simply given in American Sign Language. I have had a small circle of close friends for the majority of my schooling there and most remain close to me to this day. But for a long time I would only make friends with adults because I could not handle the unpredictable behavior of some children. 

 My grandparents were my biggest support system growing up – I went everywhere with grandpa until he passed away from cancer in 2000. My grandmother is still alive, and I am closer to her than to either of my parents. Grandparents are often more understanding than your own parents…at least that has been my experience. In the years since, Facebook has allowed me to establish contact with relatives I did not know I had, and that has also helped me feel like I have more support if I need it. 

In what ways has support been lacking?

My parents…where I do I start with them? Only my mother knows some sign language, and even then she only uses it if needed. My dad does not SIGN AT ALL.  He is the more conservative of both of my parents. He has grudgingly become more supportive of my needs, but not without being pushed to do it. Both of them, even with my diagnosis, still seem to think that medication cures everything one has, autism included. 

I have struggled with depression and bipolar disorder throughout my life and neither supported me through the worst of it when I badly needed it. So I had to rely on my circle of friends both online and off- for the support my parents have not always been willing to give. I may be an adult now, but even adult children still occasionally need support through difficult times. 

They are decent people otherwise, but some medical conditions they simply struggle to understand – especially why can’t I be “normal” like my sister? I perceive the world and things around me quite differently than they do.

You’ve said that because you are legally deaf, you don’t have any auditory sensitivity that others on the spectrum sometimes experience. Do you experience any other sensory sensitivities? How have you coped?

That is correct, I do not have auditory sensitivity. My father is a musician in his spare time away from work and growing up around that I guess I just got used to such things at an early age. I need music on at a high volume to hear it properly even with a hearing aid, so I am thankful that my hearing aid is bluetooth-enabled and I can use it to wirelessly stream music and other audio to it, at the level I need, without anyone being any the wiser.

I do however have other sensitivities. I do not enjoy temperature extremes all that well, and I do not like having air blown into my face (this is a problem on some amusement park rides). So you could say I am temperature sensitive and have some sensitivity to air conditions. There is also a particular item of clothing I do not like and thus don’t wear at all – socks. Socks have caused thigh irritation for me for years, and I do not willingly wear them unless I don’t have any other choice. Coping with these sensitivities simply means for me not exposing myself to situations that have them unless I have no other choice.

What inspired you to return to college? What do you hope to gain from your new degree?

I was concerned about not being able to go to college again because I did not have great grades in my first go-around. Chaffey College has taken me in and made me feel a whole better about making that decision, as they told me I would simply have to retake anything I got a failing grade in (which were mostly math classes anyway). I am majoring in history (an important subject now given the sad times we live in today) and am currently planning on transferring to Cal Poly Pomona (a four year school renowned for its academics near where I live) after I conclude transfer requirements in the summer with one last class I will have to take. I am taking three classes this spring semester.

I am hoping to write some history books with the degree, but am unsure about a teaching route at this particular point in time. I am simply focusing on the current semester and the one class to take during the summer, then I can make more decisions once I’ve transferred. One step at a time, as they say.

What mistakes do you see neurotypical autism advocates make?

One mistake they make is thinking they understand autism better than autistic people. Only autistic people understand their condition well enough to be able to advocate properly for it. We appreciate the help from neurotypical folks, but we have to DO THIS OURSELVES. I’d wager people with other conditions like cerebral palsy, spina bifida, or even blindness would say the same…only people who actually have the condition and live with it understand what’s involved and what is needed to bring more awareness. We might not be able to talk about it in the same way neurotypical people do, but believe me, we are quite capable of advocating for our own conditional understanding.

As a member of different disability communities, what do you see as the most important areas in society needing improvement to better welcome, accept, and include people with disabilities?

More empathy and compassion for others. This is the primary thing I see missing in this country currently. Trump’s position as President has influenced some people to act like he does, mere a**holes (pardon the language), and treat people they view as “lesser” than themselves like trash. Regardless of what we may have in our bodies or what’s outside of them that is visible, we are ALL HUMAN BEINGS. We all have the capability and brain power to accept people with disabilities as equals even though they may look or sound different from you – some people choose not to, and it really makes them the “lesser” people, not us. I do not waste my time dealing with people who would act like that, because it’s more or less useless. The human race cannot truly be a “race of humans” until we let go of our prejudices and our hate.

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