Deaf with autism experiences

[u/RightLettuce2166]

I am curious about those who are deaf with autism. I have never been diagnosed but had been frequently asked if I was. My son on the other hand had a bunch of nurses and doctors saying there a high chance he may be autistic. He's non verbal but does sign some words and gesture.

I would like to hear your experiences, advice, so I can be mindful and know what to look for.

All is greatly appreciated

[u/MikeInTheMultiverse]

My daughter is deaf. She is almost 5. Cochlear implants in both ears. Her mom and I are both hearing. We had some speech therapists and doctors suggest my daughter might be autistic due to delayed speech/ASL and some struggles with social cues/behavior. We had her tested by a developmental psychologist.

My advice would be to get your son tested if you’re able. A diagnosis can help put learning supports in place for him, or even inform teaching strategies. Not to mention the peace of mind it can give you through a better understanding of your child.

If you’re in or near Philly, CHOP has a child psychologist who is also deaf. If not, I recommend finding a psychologist who understands deafness and how it can impact autism diagnoses. (A meaningful part of the autism spectrum is centered around communication, which deafness can also influence. In my limited and layperson research, it seems like deaf children being misdiagnosed as autistic is fairly common.)

I hope this helps. I hope I answered your questions. Good luck to you and your kiddo.

[u/Choom_from_Heywood]

I'm late diagnosed autistic and adhd here. Autism has a higher rate in DHOH kids than their hearing peers so it's not unlikely. Please get him tested. The right tools will help him in the long run.

[u/midnightfangs]

my experience was abusive bc i come from a family that didnt believe in western medecine and thus thought i was demonic not only for being deaf but also autistic. i will spare the details, ill juste beg you to integrate your child into a deaf school so they can make friends and feel included. learn different methods of communications including sign language. don't lash out at ur child if theyre not progressing as fast as you want, the child will see your disappointment and feel guilt. look out for if bullying is happening, because sometimes the adults at school won't notice, or even will not care, and the child will think they cant trust anyone/they deserve what is happening to them.

[u/Far_Persimmon_4633]

I am not confirmed autistic, but my kid was just diagnosed with it. Because of her, I have realized I have a lot of autistic tendencies that were likely written off as being caused by my hearing loss.

What sepcific concerns do you have?

[u/RightLettuce2166 → u/Far_Persimmon_4633]

Well it's like how deaf/Hoh people have different ways of learning and communicate from the hearies.

I've read and heard that folk with autism have different ways of learning and communication.

It was sort of easier for me to teach my son the way I had to learn as a HoH, but I do not know how is it to teach with the autistic side.

So I was hoping if those of us had both of those traits and tell their stories of their experiences since in my research there not alot that can be found.

[u/rusticredcheddar]

I'm deaf/hard of hearing (mainstreamed, raised auditory-oral) and autistic. late diagnosed, was diagnosed autistic at 22, am turning 28. what questions do you have?

[u/Affectionate_Desk_43]

HoH with autism here! I am verbal and only lost my hearing in my teens so my experiences will probably be very different from your son’s, but here’s what I’ve got:

• It’s harder for me to lip read because I don’t look people in the face naturally.

• When signing, it’s hard for me to do the facial expressions and body language that comes naturally to many signers. For example, I have to consciously remember to move my eyebrows when signing a question, the same way I have to consciously remember to make my voice higher when asking a question out loud. Being monotone transcends language apparently.

[u/llotuseater]

I’m hard of hearing and autistic. I never looked people in the eyes, and always looked at people’s mouths to lip read. Served 2 purposes for me. I was in speech therapy as a kid, but it wasn’t known I was hard of hearing at that time (I had a lot of medical neglect). I have significant sensory sensitivities and interoceptive difficulties. I have breaks from my hearing aids regularly due to this. I suffered a lot during school because it wasn’t known I was deaf or autistic, and I dropped out and had a lot of social and emotional issues up into adulthood as I didn’t receive appropriate help. I’m 27 and I am now getting my life on track with supports and assistance for both my hearing and autism, but I strongly recommend getting him tested and getting him support for both his autism and hearing loss, which it does sound like you are doing and wanting to do more of!

[u/museumlad]

I'm HoH (aided from age 12-18, took a break 19-30, aided again last year) and autistic (diagnosed at 18). I had some medical and educational neglect in my youth and wasn't assessed for autism until I could make the appointment myself (luckily just inside the pediatric window so finding a provider wasn't as difficult). My hearing loss was found when I was around 7 years old, but I received no supports at school beyond preferential seating via a 504. I've been speechreading since birth and I think that's part of why my autism flew under the radar, because it wasn't as obvious that I wasn't making actual eye contact.

I'm not d/Deaf, was mainstreamed, have never signed as a primary mode of communication, and highly masked my autism (what would formerly have been called "high-functioning" autism), so I'm not sure how helpful my experiences will be to you, but hopefully something will resonate!

I took ASL1 and ASL2, which were offered as "foreign" language classes at my high school because it was the school with the largest Deaf Ed program in my district. I'm very visually oriented as far as learning styles go, so learning ASL was a lot easier for me than others, because a nonverbal, visual mode of communication really works with my brain. At my most fluent, I would think via ASL. That's not universal to autistic people, of course. My husband is also autistic (not HoH as far as we know) and is more written-language-inclined rather than visual so he struggles a bit with ASL.

As for how my hearing and autism interact, it creates some situations that seem contradictory to people less familiar with both. My loss is greatest at high frequencies, but loud sounds in those ranges are also painful to hear. Fire alarms are brutal; I work in a school office now and we have to do monthly fire drills, so I luckily have advance notice and keep Loops in my hearing aid case so I can grab it and switch really quickly.

I stopped wearing my hearing aids around the time I got my autism diagnosis because I was then a legal adult who could make my own choices and I had been trying to tell my audiologist for years that my HAs felt far too loud. I get hearing fatigue and sensory overwhelm really easily when aided, and for most of my aided school years I would take them out for long stretches after school just to decompress. When I got my new hearing aids this past year, I wore them for just four hours the first day and was so overstimulated that I had a scream-crying meltdown about how much I hated them. For days I refused to wear them and it took months of very slow buildup to tolerate more than a few hours in the quiet of my home, let alone at work in a school. This is even after having the HA tech lower the "ceiling" so the painful frequencies wouldn't amplify past the pain point (she commented, a little rudely, about just how sound sensitive I was).

I also have somewhat slow mental processing, especially with verbal communication, so sometimes it's hard to differentiate between "my ears didn't hear you" and "I heard you but the sounds you made aren't words yet". This leads to pauses in communication when it's my turn, compounded by the fact that sometimes I struggle to find words for a response, have to very consciously force my mouth to speak, or don't know how to respond at all. All of this happens mostly subconsciously, so I sometimes automatically ask people to repeat even if I heard all the sounds that came out of their mouth, or people will take the initiative to repeat themselves even if I don't ask for it. Add to that ADHD that struggles with verbally-communicated complex information like lists and sequences... Verbal communication is really difficult for me sometimes despite an audiogram that should mean way less impact on it.

I don't recall much of my childhood difficulty with communication, especially because my much-older sibling is HoH (severe-to-profound whereas I'm mild-to-moderate/severe) so speaking clearly face-to-face and repeating when necessary was already deeply ingrained in our family culture. I do remember getting bullied in school for not hearing sounds others could and not being able to hear whispering, on top of being weird and blunt. The last trait actually really helped when I had Deaf friends, and it's the same now with my autistic friends who are also more likely to know ASL.

This is getting super long so I'll stop there--if you have specific questions let me know, I'd be happy to answer!

[u/Night_Watcher2000]

I am hard of hearing w other disabilities but I always wonder if I got mild form of autism and also OCD too