3.5yo DS has been diagnosed with autism -AMA

[Clareypoo]

Just that.... posting to share our experience to see if it might help anyone.

He is our only child. Myself and DP are primary teachers so we both have some knowledge and experience of ASC, even so it has been a challenging time!
He was diagnosed last month and I think it has taken me a month to start to process the diagnosis and what this means for us and him.

You might want to try to change your title to "diagnosed autistic" or you risk a pile on. Most people who understand autism or who are autistic prefer autistic over "with autism".

Do you know anything about the neurodiversity paradigm and or movement? If so what do you think of it?

What a strange response. My 19yo doesn't care how it's described. All he cares about is how people treat him.

To the OP. I too work in education (special education!) and so new something was different with my ds development. I also noticed lots of physical differences that got worse as he got older.

He's been diagnosed with a rare genetic neuromuscular condition and autism. I still have days where I am processing his future even though we are years into diagnosis. I think it's the same way everyone wonders/ worries about their children and their futures - it's just different worries.

neurodiversity paradigm - no I don't.
I'm also hoping for help and advice as well as sharing our experience of the diagnosis process.

How do you feel?

Honestly, I feel a little happier now he's been diagnosed. There was a lot of 'hes only young he'll grow out of it' when we knew it was something more.
I am so worried about how he will fit in with a predominantly NT world.

https://www.neurodiversityhub.org/what-is-neurodiversity

I'll thank you not to talk for all of us. I am diagnosed with autism. I don't like describing myself as diagnosed autistic because the condition isn't who I am, it's something I have. Stop trying to police people's language, everyone uses what they're comfortable with.

I'm glad you're feeling happier, OP.

It's such a long process for you and I can imagine it must have been hard at times. There's a lot of help and support on MN.

I have no experience with this, just wanted to check in and ask how you were doing. X

I don't claim to talk for all, I literally say "most".

Ffs I get a pile on for trying to avert a pile on. This place is so bloody argumentative!

Has anyone else in your family got Autism?

Also as a baby were there any subtle signs or indicaters early on?

At what age did you suspect you might need to consider an assessment? What behaviours did you observe? Glad you are feeling happier and thank you for doing an AMA

Can relate to how you are feeling. It takes time to process and to come to terms with how the future will be different. It is a lifelong condition however so much can change as they develop. As primary school teachers you will be really well informed, teacher training helped me in managing my son's behaviour as he got older for instance. On a side note do apply for DLA, when our son was diagnosed they signposted us to this, it can go towards any additional support he may need.

https://www.england.nhs.uk/learning-disabilities/about/get-involved/involving-people/making-information-and-the-words-we-use-accessible/#:~:text=Many%20autistic%20people%20see%20autism,from%20autism%2C%20symptoms%20and%20treat.

See "getting words right about autism".
Most autistic people (not all) do prefer this language. My autistic family members certainly do, because this is the way they are and not something they have.

Nobody in our immediate family has autism but there are possible NT traits in extended family.
The early signs for us were him really struggling with going anywhere but home from being 12 months. He be so restless and upset, even when visiting close family. He also didn't smile, wave and interact with anyone as you might expect a baby to.

How was it picked up? What signs did you notice?

My son was also diagnosed at 3 and a half. The health visitor referred us to SLT when he was 2 as he didn’t have any words and the few he had said before he was one were ‘lost’. He also couldn’t follow a point or point things out. Plus he had repetitive behaviours.

Just seen you’ve answered that!
Agree with applying for DLA as soon as possible.

DS1 is AuDHD, he’s 11. What you might find @Clareypoo is that your lovely DS acquires one or two autism-adjacent diagnoses over the next few years. ADHD is DS1’s ‘presenting’ neuro-style but a lot of his underlying traits are autism-related. He’s very sociable and popular, of course this could change as he enters the teenage years!

The other thing I would reflect on is neurodivergent traits in immediate family. You might not consider you/DH to be ND, but this was my main realisation after DS1’s diagnosis - that DH/I were both ND.

Yes, agree with the point that it runs in families. My son's cousin is non-verbal and two other cousins are going through diagnosis. The professionals that diagnosed him advised of an approx 20% chance of any further children having autism.

Most of those surveyed do = some do not. So why not use both, to incorporate the preferences of all those people too?

You were still policing OP's language though, even if it was with the best of intentions.

Thanks for all your replies.
We went for to our GP to request an assessment when he started day nursery at 20 months and they were concerned about his behaviour (avoiding all children, lack of curiosity about games, repetitive behaviour) and not meeting milestones. SaLT also recommended an ASC referral.

An early diagnosis is really helpful and you are armed with a huge amount of useful knowledge given your job. It does take time to process and this is absolutely normal.

Yes, my next thing is getting an EHCP in place so he can have support in September when he starts primary school. The LA have just agreed to go an assessment so hopefully this should go ahead in the new year.
Thanks for the DLA info. I haven't looked at that yet but I will. We are both still PT due to DS not being able to cope with preschool for more than 3 hrs which is taking is toll on us financially. We have my parents but they both still work so can't help with childcare.

Thats what i am nervous about. I have Autism and Afrid, my dad has Arfid (not diagnosed he is in 60's) my husband has ADHD. My little cousins all have ADHD and Autism..

So i'm wondering if our LO will, but not sure if i would pick up on it as our whole family are so its pretty much our normaility so unless it is extreme doubt we would pick up on it 😅