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Discussion
Posted by emmaj91
05/10/20 11:07 AM

Hi all, I am new Here! I will just give a little background on my 3.5 year old. my Son has always have development concerns around communication speech and language. When he was a baby at 10 month old was the start of his first ear infection. Following this he's had around 7-10 episodes to date of ear infections. he also had moderate hearing loss 40dcb to both ears and we do not know how long he suffered this for but he was diagnosed with glue ear and moderate hearing loss at age 2.4 years old. Fast forward to 2.11 he had grommet insertion and adenoids removed. Then no ear infections for 6 months he currently has another one. a couple months ago his hearing was tested and he now has hearing loss to only one ear. I am wondering what I should do next? His speech and language is significantly delayed. although he is verbal he is able to talk but is more on par with a 2 year old. 

he has an assessmnet next month for autism and I'm petrified he will be misdiagnosed as autistic and perhaps his hearing issues are not being considered as significant. the ent doctor actually discharged him from the clinic despite him having hearing loss to one ear still. 

I am just looking for advice really on what I should do next? I dont want to blame my sons delays all on hearing loss but the fact is he had a long history of ear infections, glue ear and hearing loss right at vital time in his development. 

Discussion
Posted by Claire ndcs moderator
06/10/20 04:49 PM

Hi,

Thank you for sharing your experience on your community.

I’m sorry that your son was recently discharged from ENT. I appreciate how nerve-wracking waiting for your son’s autism assessment must be, especially when you have concerns that his hearing loss may be attributing to his communication delay.

Glue ear can cause a temporary or fluctuating hearing loss, and this may explain why your son’s speech and language are delayed. We have an in-house audiologist who would be able to talk things through with you.

You may also find our information about pragmatics helpful, as it explains how children with a hearing loss can sometimes miss out on the subtleties of communication and how they can be supported with their development.

If you would like any personalised support or advice please contact our Helpline. Hopefully in time other parents will also respond here and share their experiences.

Take care,

Claire

Your Community moderation team

Discussion
Posted by elliot
20/10/20 06:02 PM

Hi,

I just came across your post and would be really interested in the outcome/advice you're given!

My son turned 2 this week and he has bilateral sensorineural hearing loss, which is moderate in both ears. He does also suffer with some congestion/glue ear during the winter months, but this is minimal. I'm sorry to hear how much your little one is suffering with it.

We had our first appointment with a speech and language therapist last week as he still hasn't said his first word and he has minimal understanding, he also doesn't wave/point etc. After our visit she mentioned that there may be the possibility that my son could be autistic and that if he is still having issues with interaction and communication that he could be sent for an assessment for autism in 4 months time. So like you I am also concerned that a diagnosis could be incorrect and the main reason for his delay is his hearing loss. He has good eye contact, is great with food and lets me know what he wants - all communication that doesn't involve his hearing.

I hope things get sorted for you and your little one soon.

Discussion
Posted by shelbs
20/10/20 09:05 PM

Hi 

Sorry to hear about the tough time you have been having with you son and his diagnosis.  I don't have personal experience of possible autism with glue ear (my daughter has hearing loss from  glue ear) but I thought it might be helpful for you to know that (in my experience of working with families) most often autism assessment is over a number of months - around 6months - and not diagnosed there and then (although it is sometimes and it will also depend on other factors).  If that helps at all in alleviating any of the anxiety you might be experiencing.   Best wishes to you all 

Discussion
Posted by munchkini
24/10/20 10:04 AM

Hi, my son had his hearing diagnosed prior to having an autism assessment. He started out with what was thought to be just glue ear... It wasn't until he went to hospital to have grommets inserted, that they realised he actually had cholesteatoma. At this point, we thought the issues he was having at school were purely due to hearing... It wasn't until he had multiple issues at school, we had a full neurodevelopmental assessment done, and found out he was navigating the world through being autistic, ADHD as well as having hearing and sensory issues.


It can feel scary at first, but in the long run, it is better to know so you can ensure his needs are fully met at school. You might find he needs an EHCP (Educational Health Care Plan). You may also hind that he is denied the assessments required to decide whether he dies are at first denied by your Local Authority, but be brave, push forward over 95% that are initially denied, have that overturned at Tribunal.


Being autistic is often portrayed negatively, but as the saying goes, “If you’ve met one person with autism, you’ve met one person with autism.” There isn't a 'type' as such, everyone is different, although they might experience similar issues and reactions.


Your best bet is to join some local Facebook groups and create your support network. Find out as much as you can and always remember that no matter what, your child hasn't changed and isn't less, just different, which is fantastic. Xxx

Clare