misdiagnosed

[evie1703]

Hello. My son who is 4.5 has been diagnosed with autism last week. Since he was 1 yr old he suffered from tonsillitis, regular ear infections, glued ears and had 2 operations to have his tonsils removed - last one 4 months ago. His speech was delayed. He is hyperactive and had difficulty with attention. His ears only cleared at the end of September and he can now hear properly and his speech is coming with the speed of light now. He is calmer, less aggressive towards other children but still finds it difficult to interact with other children in reception class as he only started 4 months ago. We believe he has been misdiagnosed with autism - diagnosis was based on a 30 minutes school observation when he was 3 weeks into school, questionnaire from school and questionnaire from us. We are trying for a second baby and this news came as a complete shock. I don't know what to do considering the risk of autism in siblings and on the other hand the high possibility of diagnosis. Has anyone been a similar situation?

I'm surprised how easily you got that diagnosis.

Who diagnosed him and how was he referred?

Hi. Diagnosed by Consultant Neuro-developmental Paediatrician and speech and language therapist. The referral process took almost a year and a half because we were concerned about his hearing, speech delay and hyperactivity so we thought it may be ADHD. However first appointment was in August including interview with me when he did not hear properly before his second operation, school observation at the beginning of October and diagnosis on 4 December. I requested another appointment to discuss it however it will probably take months before they see me. I don't know if I should accept it and just try to get him as much help as possible or press for second opinion. I am worried that based on this diagnosis we may decide not to have more children :(

I must admit I thought a paediatrician had to be involved in a diagnosis of autism , I would agree with what ouryve said

Who has diagnosed him ? That is a very quick assessment and reaction to a concern. Certainly prolonged hearing issues can lead to a misunderstanding of the problem and most hcps would err on the side of caution and revaluate once physical issues have been resolved. That is not to say that his communication issues will necessarily resolve themselves without intervention. Have you had any direct contact with whoever assessed and diagnosed ?

I had one hour meeting with a pediatrician who assessed and took history since pregnancy during which my son was playing loudly in the room, when asked he did not follow her instructions to walk straight on the line when did not react to his name until after I called him 3 times. That was at the time when he did not hear and pediatrician decided to observe at school at the beginning of October to give him time to settle in. Observation took 30 minutes during which they reported he did not communicate with other children, preferred adults, was not following instructions.

Agreeing that hearing problems are usually ruled out before a diagnosis of ASD is considered, unless the ASD is obvious, takign into account the hearing difficulties.

His diagnosis will not be set in stone, regardless of how it came about. DS1 was a very hyperactive toddler (hearing found to be fine, once he cooperated with tests) and received a diagnosis of autism with associated hyperactivity at 3 1/2. That has been modified, since then, as new things have been uncovered and now reads more like ADHD with atypical autism.

With your DS, if he has been misdiagnosed, then he will be one of the very few who appear to "grow out of" autism. If the diagnosis is in the right ballpark, then the fact that he has it now will not disadvantage him and, hopefully, as with DS1 you will not be just left to it and you'll get a more accurate picture as he grows up. He may yet be diagnosed with ADHD, if that is right for him. That is unusual before the age of 6 or 7, anyhow.

Hello
It's a big shock and even more so if you aren't sure it's right
You could take this approach : for now, it is the key to getting help . if you can find out what help it will get him then it's easier to decide if it's worth going along with for now. It might mean extra support for example a 1:1 for certain times of the day - for any child it's better to have a lower ratio so that's a good thing - etc etc
Then if time goes on and it is wrong, his development will show that.
You could always plan to take him to reassessed in a year or two. (ask for an NHS one)
(In the meantime, apply for DLA & put it in a fund towards a private assessment at that time if the nhs one is not useful.)

My Dd, now 13, had chronic hearing issues as a child, was under speech and language for years and unfortunately her autism wasn't picked up until her high school transition went badly wrong.

I am convinced that this should of been picked up by professionals when she was younger and early intervention would of started. Instead she struggled throughout her school life, was bullied and had a very distressing time a few years ago.

So I'm coming from this from my perspective. You could work with the diagnosis and if it doesn't fit, it will become clearer the older your child gets. Just a thought.

Thank you for all the messages. It is very helpful. I agree that getting extra help would be great, however I am worried that based on the diagnosis he may be offered the wrong type of help and we will loose valuable time. I found out about private assessment of strengths and weaknesses of a child diagnosed with autism and based on that tailoring a program with the right help. Has anyone done anything similar?

Hello - yes, that is one approach.

I think that some of the strategies would be the same for a child with reduced hearing and ASD I think.

Certainly having a low ratio helps.

What about contacting ICAN and asking them what should be put in place for a child with ASD versus a child with hearing difficulties. Then you can make sure that the wrong help isn't being offered?

What is the school's SENCO like?

Thanks for info about ICAN. I didn't know about it, it is very helpful. SENCO has not been involved yet. We had meeting with teachers yesterday and they seemed to be as lost as what to do as we are. I will arrange another meeting. I only found out about SENCO role yesterday evening when browsing internet otherwise I would ask about it at school in the morning.

Usually an ASD diagnosis gives a child "access" to the ASD outreach team who advise the school how to tailor things to your child
(You don't get this with a diagnosis of "just" glue ear.)

The other helpful organisation is NCDS
You can phone both them and ICAN for advice

I would try to find out what provision they'd recommend and go chat to the SENCO and see what can be put in place.

Many thanks Tamara. I have just called ICAN to get more info. The assessment cost is £1,600 + VAT. As you said I need to speak to SENCO first to see how they can help.