Autism and Deafness? Then no Cochlear Implant for You

Monty, now aged 11 with ASD, has an assistant who comes in the afternoon to run our ABA-inspired home program, let’s call her Stella.

Stella is a student training to be a teacher for deaf people, so her knowledge of ABA comes from her time with Monty.  Nobody here uses ABA to teach the deaf.

Her latest task was to try and teach 3 eight year old children to count to ten.  The problem being that two of the children are deaf and can only say “yes” and “no” and the third child is deaf, autistic and non-verbal.

Using ABA she managed to teach the two deaf children to count out loud to ten and to match objects marked with each number.  Very good and the regular teachers were very impressed.

My comment was that it was a pity nobody taught them to say something more useful.  How about “hello”, “my name is Tom” etc.

What about the deaf boy with autism?  It turns out, where we live, if you are deaf and have other “complex needs” you do not get a cochlear implant.

Cochlear implants, when implanted while the deaf person is very young, can be hugely successful.  About 400,000 people worldwide have received them.  You end up with a different kind of sound than that experienced by non-deaf people, but it gives the brain inputs which allow it to identify and process speech and other sounds.

Cochlear Implants

  

A cochlear implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing.

Cochlear implants may help provide hearing in patients who are deaf because of damage to sensory hair cells in their cochleas. In those patients, the implants often can enable sufficient hearing for better understanding of speech. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds. Newer devices and processing-strategies allow recipients to hear better in noise, enjoy music, and even use their implant processors while swimming.

Cochlear implants for congenitally deaf children are considered to be most effective when implanted at a young age, during the critical period in which the brain is still learning to interpret sound. Hence they are implanted before the recipients can decide for themselves, on the assumption that deafness is a disability.

Children with cochlear implants are more likely to be educated orally, in the standard fashion, and without access to sign language (Spencer et al. 2003). They are often isolated from other deaf children and from sign language (Spencer 2003). Children do not always receive support in the educational system to fulfill their needs as they may require special education environments and Educational Assistants. According to Johnston (2004), cochlear implants have been one of the technological and social factors implicated in the decline of sign languages in the developed world.

Cochlear Implants and Autism

Since people with autism have various sensory issues, they are not considered suitable candidates for the only therapy that could give them the ability to hear.  At least that is the case in many countries.

The word is that in the first year it is hard to adjust to a Cochlear Implant and this is one reason why they have to be implanted while the person is very young.  It takes the brain a while to adjust, and the more plastic it is, the better it can adjust.

Since people with autism are not exactly flexible at the best of times and they can be prone to tantrums and violence, they are seen as a challenge too far.

This seems rather cruel to me and very short sighted.

As Stella said:- “for that first year, who is going to look after them?”

My response would be “who is going to look after them for the next 60+?”

After all, would you rather care for a sometimes violent toddler for 12 months during his adaptation to hearing, or a sometimes violent, deaf autistic adult for life?  I suppose they just drug the adults.

How common is deafness with autism?

According to some research, about 5% of people with deafness have autism and about 3.5% of people with autism have deafness.

I think when they say “autism” they mean serious autism, not the modern, all-inclusive, DSM 5 autism-lite.

What does the Research tell us?

As always, there is data on just about everything and this includes autism with deafness and the efficacy of Cochlear Implants.

Rather as I expected, it is not true that giving hearing to deaf people with autism is a bad idea.  The research actually shows the opposite.

Just as teaching deaf people to count aloud is possible, when you apply simple behavioral techniques, so is giving hearing to deaf people with autism.

Cochlear Implantation in Children With Autism Spectrum Disorder.

Results: Fifteen patients with history of ASD and cochlear implantation were analyzed and compared with 15 patients who received cochlear implant and have no other disability. Postoperatively, more than 67% of children with ASD significantly improved their speech perception skills, and 60% significantly improved their speech expression skills, whereas all patients in the control group showed significant improvement in both aspects. The top 3 reported improvements after cochlear implantation were name recognition, response to verbal requests, and enjoyment of music. Of all behavioral aspects, the use of eye contact was the least improved. Survey results in regard to improvements in patient interaction were more subtle when compared with those related to sound and speech perception. The most improved aspects in the ASD patients' lives after cochlear implantation seemed to be attending to other people's requests and conforming to family routines. Of note, awareness of the child's environment is the most highly ranked improvement attributed to the cochlear implant.

Conclusion: Cochlear implants are effective and beneficial for hearing impaired members of the ASD population, although development of language may lag behind that of implanted children with no additional disabilities. Significant speech perception and overall behavior improvement are noted.

Children with Cochlear Implants:  Complex Needs - Complex Outcomes

"Although the group of deaf children with complex needs is overall a heterogeneous one, there are subgroups that would benefit from further and detailed investigation in thinking about cochlear implantation, for instance deaf children with Down’s syndrome, Children with Autistic Spectrum Disorder, cerebral palsy."

  

Children With Cochlear Implants and Complex Needs: A Review of Outcome Research and Psychological Practice

Finished switching ears off!

I had another surprise a couple of days ago; I was standing with Monty outside the entrance to a very noisy ice-cream bar.  There were babies crying, a lady begging rather aggressively and an orderly queue to enter the shop.  Finally, the noise abated and I heard Monty say:-

“Finished switching ears off!”

Is there more to this than the emergence of spontaneous and appropriate speech?

Selective Hearing, Elective hearing and (S)elective mutism

I once did a course called Noise Control as part of my Engineering degree.  I recall that at the start of the course, the Professor confessed his desire to be able to turn his hearing on and off; clearly there were some noises he would prefer not to hear.

If you have children you will have discovered “selective hearing”; whenever you want them to come for a meal, they just do not seem to hear you.  If you offer ice cream though, they will hear the first time you call.

There is also the relatively common case of selective mutism, in people with anxiety disorders, they lose the ability to speak in stressful situations.

I think that many non-verbal autistic children probably have elective mutism; they just decide not to speak, or perhaps there is a barrier inside them that they just cannot get over.

Many people with autistic children initially go through a phase of thinking their child is deaf.  I know a child who lost his hearing and then a couple of years later regained it.  I met him just after his hearing was restored and I was convinced he had autism; he had all the characteristics.

Maybe some autistic children have elective deafness and/or elective mutism and perhaps a little pharmacological intervention could actually help them overcome this barrier?

For Monty, thankfully, these problems are in the past.  For him ABA and PECS did the job.