Who do you tell ASD diagnosis

[Sparkle41]

I would really appreciate your advice, I am expecting ASD diagnosis this week for my DS2 (4) he has 2 NT siblings. His village pre school are in the process of applying for EHCP and his main issues are speech delay and delayed social interaction, at the moment we are not seeing many other issues. We live in a village and it is very obvious due to his speech that he is behind developmentally. I'm not sure if we should just put the ASD diagnosis out there or whether it should be on a need to know basis. It's all I can think about at the moment but hoping over time that he becomes more than an ASD diagnosis and that I can talk about him without referring to his challenges. Were you very open about it from the beginning? It has taken me 6 months to start to come to terms with it but I can still be caught unawares some days and I just well up. Sorry if I sound really pathetic, hoping it all becomes easier to deal with, just not sure what to say. Quite a few people know he has been having development assessments but I haven't really gone into detail.

[Imaginosity]

This is a hard one. I wish I was brave enough to be upfront but I worry about otters prejudging DS and expecting him to act in certain ways.

Some people make assumptions that all children with ASD have particular traits. My son has ASD but he does not have any obsessions. A work colleague of mine presumed my DS must be extremely intelligent when he was diagnosed - he's bright but not a genius.

Also, because DS is high functioning I feel uncomfortable using the same word that applies to people who are unfortunately lower functioning - as I also don't want people assuming my DS isn't as capable as he is.

In the end people are going to work out for themselves that there is something a bit different about your child even if you say nothing. For people I don't know well I prefer just to say DS has 'some issues' or can be a bit emotional. Like if I'm dropping him to a birthday party I prefer to talk to the parent and let them know things aren't quite right with DS. I don't feel like I need to spell out his exact diagnosis - I imagine many of them put two and two together.

Sometimes I feel like this is DS's private medical information and he might be annoyed at me in the future for blabbing it to everyone.

I admire people who are open and it and comfortable with it. I feel like I'm almost trying to cover it up in the hope DS will pass as normal and be accepted.

[MrsBobDylan]

We're fine with talking about ds' diagnosis. I've always been a little in denial about how obvious his autism is so I tend to tell people because I don't want them judging him for his behaviour. My dh always says it's pretty obvious he's autistic but likes to tell people as we're proud of him and autism is a part of who he is.

[Imaginosity]

Yes it's weird because I don't want people pre-judging DS if they hear he has autism - but it's also not fair on DS if I stay quiet about it and others judge his behaviour and decide he's just badly behaved for having a tantrum.

[WellTidy]

I think the responses you will get will depend on the reaction people have received when they've been open about a diagnosis.

We've had a fairly positive reaction. My DS2 is 3yo and attends a pre-school. I signed him up for this particular pre-school at birth, as my DS1 had such a wonderful experience there. I became friends with the owners and staff and felt very positive about how caring, kind, non-judgmental and nurturing they were. This was when DS1 was there and we hadn't even had DS2 at that point.

Feeling the way I did about the pre-school, I was completely open with them in the year before DS2 started there, when we knew that DS2 had at least a speech and language delay. And when eh started, it was obvious that he had huge social communication and interaction problems. Pre-school was very supportive. They used their discretionary budget to fund one to one support there for him before the LEA was willing to. They also wrote reports which fed into his assessment and then ASD diagnosis. They've also introduced me to an amazing woman who is now DS' support worker and has become one of his ABA tutors. Being so open with pre-school has changed mine and DS2's lives. But that is because this particular pre-school has been exceptional in their approach and understanding.

We have also been very open with friends and family. We couldn't not be tbh - DS2's ASD is very, very obvious. He is globally delayed by 18 months - 2 years on average. He has the speech and language of a child about half his age.

I've also been open about it at my workplace.

The people I do not tell are those I barely know. Eg parents who I am on nodding terms with at DS1's school, who are very competitive for their children.

[Sparkle41]

Thanks for the replies, I feel like if I say ASD then there is a need to launch into how it effects DS, otherwise I do think people pre judge but I don't really want to go into too much detail or have people gossip about him (I know I shouldn't care and need to grow a thick skin). At the moment DS is not having many tantrums but he is very echolaic/learns speech in phrases and is definitely on the sidelines of peer interaction so he does stand out. I guess because it's early days the whole thing is overwhelming but hoping with time it becomes part of him, at the moment it feels like it is all of him (if that makes sense). Thanks for listening and deep breath for diagnosis meeting....

[lamya190]

I've only told school and close family. I have never felt a need to say 'he is acting like that because he had ASD' if he tantrums or etc as he never does. He is generally a very good boy who I can take anywhere with me and he behaves very well. If he was more severely affected then I think it would be a different story and situation. Good luck with the meeting, we had the diagnosis meeting 10 days after I had my second son c-section! It was a very emotional time but almost a year on we are all living and things have improved immensely since last yr !

[lamya190]

And echolalia is a great start. Last year at nursery it was the majority of my sons speech and he was said to have an 18 month speech and language delay. Fast forward this year he no longer has a speech and language delay so hopefully things will continue to improve for your son, good luck

[Sparkle41]

That's great to hear Lamaya190, can I ask was your sons immediate or delayed? My DS, just turned 4 is around 18 months delayed, can ask for anything he wants, often only uses 1-2 words, sometimes phrases but can't answer any questions. He does recite a lot of stuff from TV programmes or say learnt phrases out of context, hence why the Paed was sure he has ASD and why he does stand out.

[ArtfulPuss]

DS1 (11) is older than your son so this might not be so relevant, but he was finally diagnosed with ASD last week after 7 years of meetings, reports, form-filling and frustration (we did move counties 4 years ago though, to be fair, and had to start again from scratch)… and I feel like shouting it from the bloody rooftops!

Or at least informing all those people (MIL and an old class teacher, to name but two) who dismissed our concerns and said we should stop looking for problems where they didn't exist. That there was nothing wrong with him. That they didn't agree with 'labelling' children. That he was a loner, a daydreamer, a 'bit odd', rude or 'just a 7/8/9/10-year-old boy'. That he would 'grow out of it'.

We're not broadcasting it but we're not hiding it either - we have told the people who care, those who have some idea of the journey we've been on. And I will have no qualms about telling others as and when appropriate. I don't want it to define him, but at the same time I don't ever want him to feel that it's something to be ashamed of. I feel the same as MrsBobDylan - we're proud of him and it's part of who he is. We've talked through the report with DS1 and he seems happy about it too, as it removes all the uncertainty, which in itself was a source of anxiety. It's official confirmation that it's not his fault that he finds certain things difficult (when he was younger he used to say he 'hated' himself for being 'rubbish' ). It has helped his two younger NT siblings to understand too. And we feel 'armed' for the challenges he'll face during the transition to secondary school. Once there, it will be up to him who he tells amongst his friends. We'll get him an Autism Alert card that he'll be able to carry, so that he can decide for himself if it's ever relevant to show anyone. I once read on here, years ago, about a diagnosis being like an umbrella that you keep in your bag out of sight: as long as the weather's fine you won't need to use it, but you know you know that you've got it with you in case it starts to rain.

Good luck at your meeting. The most positive things I took away from ours (apart from the diagnosis itself) were: information about all the support that we can now access and a comment from the clinician about how 'the world needs more people who see things differently'. I could have hugged her for that!

PS sorry for long post, emotions on the subject still running pretty high!

[lamya190]

He had delayed echolalia and also found it difficult to answer questions. our NHS speech therapist went into nursery to give the staff tips on how to enhance his speech and language at that time. She suggested I put him in special school, but I wanted to give him a chance and see how he progresses. He is in mainstream now no EHCP though I take him to private social skills group.

[lamya190]

And to add obviously doing extremely well, I'm so so proud of him