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.

Oh really I saw I'm autistic / I have autism.

Look at you trying to start the pile on

OP can use whatever the fuck language she wants to describe HER child.

@Pickles2023

You’ll be extremely well-placed to support your future child should they be autistic. I think, in the past, one of the reasons it wasn’t diagnosed is because the autistic child’s behaviour was ‘normal’ to the parents, who were also autistic.

Don't be ridiculous.

We use autistic for DD but it's personal choice...literally nobody was going to pile on over how the OP chooses to describe her own child.

School is likely to be really hard if he's only coping with 3 hrs of nursery. If you are lucky the EHCP will help but how the school chooses to treat your child can be absolute pot luck. Be prepared for consistent school refusal, he's going to be amongst the youngest anyway and it may be more than he can handle. Accept it if he can't cope, don't force him to go if he doesn't want to. You do still have six months to spare before he hits compulsory school age. I'd also look into specialist settings, it may need to be an option and worth considering if you need to go back to work.
We fell into the too bright/high functioning (sorry for using this descriptor but it's the least complicated way of describing things) for a specialist setting, but he didn't cope with school. We now home educate.
Btw I am not anti school by any means but it just didn't work for our son. I think it's better to wrap your head around the what ifs in advance, rather than feeling like you're rushed into a decision.

I agree with @DrRuthGalloway ; how would the OP even know there was a debate around this, in order to make an informed choice, if no-one mentioned it?
@Clareypoo I'd really recommend following autistic advocates like Neurowild and Autism Level Up: I am autistic, and have autistic children, and it has hugely changed my approach in life to make sure I'm coming from an autism-affirming viewpoint, rather than internalised ableism. Autistic Not Weird is also good, with a great annual survey of the autistic community.
I always say "All the best people are autistic!" 😉

How has your DH handled this process and his diagnosis ?

My son was diagnosed autistic at 2 in 2021. It was really obvious to us from 18 months. We got an ehcp before he went to preschool as we knew he wouldn't cope. My advice is don't accept the first draft, keep pushing for my provision and clarity on language. Best of luck.

@Catbustotoro

I agree with @DrRuthGalloway ; how would the OP even know there was a debate around this, in order to make an informed choice, if no-one mentioned it?

There is only a debate because people seem to think they have the right to tell others how to refer to themselves/their DC.

No debate is needed and OP certainly doesn't need to be patronised about making an 'informed choice' - he can say whatever she wants.

On what authority do you say "no debate is needed"?

OP you wouldn't know from some of these posts, but the reason for "autistic person" rather than "person with autism" is not trivial to many in the community. It's about accepting autism as a brain type and as fundamental to a person being who they are, rather than something you could take away from them, like chickenpox. This language then leads a person's thinking down a pathway towards acceptance of the autistic person's right to be, and adaptation of their environment, acceptance of autistic friendships etc rather than training the autistic child to be as close to non- autistic as they can be.

It doesn't mean you have to use that terminology, but it's useful to know why it's important, and indeed that it is important to many autistic families, mine included.

@scoutingfor I disagree.
As an autistic person I feel strongly about the issue of language, as do many others.
But this argument gets a bit circular... if she's allowed to say whatever she likes, then aren't the rest of us?

On what authority do you say "no debate is needed"?

That works both ways...

Yes of course. That's kind of my point.

How did you get diagnosed? GP? What was the process?

I think language naturally evolves. No one would allow "retarded" nowadays or "spastic", even if a parent was using it....

I was diagnosed myself fairly recently with ADHD and ASD and I could not give a shiny shite how it is worded.

My dd was diagnosed at 2.5 but is now an adult. My advice to all of you with little ones is to remember that early diagnosis means you can provide early interventions, but doesn't necessarily mean that they will be lower functioning. Dd was nearly 4 when she started speaking, nearly 5 for potty training, has complex mental health issues (all with 3 letter abbreviations it seems) but is about to graduate university, lives independently and is married!

Did you notice differences from birth op - we had issues right from the beginning but dismissed as overly worrying first time parents, dd2 was so different

We already had concerns about DS. When nursery approached us about their concerns, when he was 20odd months, we went to GP for a referral to a paediatrician. We were seen fairly quickly but the paediatrician felt it was too soon to put him down for ASC assessment. SaLT came to do an assessment too, off the back of the GP referral, and they recommended that we go for an assessment and wrote to the paediatrician to get us on the pathway to assessment.
We also have a really good portage worker who supports us. His day nursery were a bit rubbish and basically tried to get us to move him but portage help them understand some of his needs.

He's my first and only child- didn't really notice anything until 12 months but looking back at videos he's always looking at shiny lights or mirrors instead of people...
He's always had a social smile and a good understanding of simple spoken language but can't respond/answer a simple question or make choices.
Yes, we were dismissed as overly worried parents. A family member said they didn't understand why we were labelling him so young, it's been hard.
And I know that others have it hard too

Glad your DD is doing well. Your story gives me hope.
Part of the processing of a diagnosis is what my son's trajectory through life will be now that it's not going necessarily going to be NT linear. High school is a meat market and I'm already worrying about that!

No questions but wishing you the best @Clareypoo . I have 2 kiddos with ASD. The elder is in a top Uni, the younger is in a special class in a mainstream school. Both thriving and mostly happy although the elder has a tendency towards melancholy when she is overwhelmed. Wouldn’t change a thing.

I feel for you here, DS1 was also diagnosed at 3.5, and we faced a lot of the same comments/judgements.

Ten years later, he is an amazing 14 year old who has been in specialized education for 7 years and is a wonderful person! We get so many compliments about him, he is funny, interesting and polite. I am so proud, because when we were where you are now, I could never have envisaged this. I gave up my job (also a teacher) and concentrated on daily therapies until he went into the specialist school and it really has paid off.

DS 2 has just been diagnosed a couple of weeks ago, aged 10. Completely different set of indicators, and I half knew what the diagnosis would be, but still felt taken aback. However, I do feel that knowing what we know, we had put a lot of things into place for DS1, which indirectly helped DS2 to develop his own coping mechanisms.

Really goes to show that the old saying 'when you have met one person with autism, you have met one person with autism' is true.

👏🏻👏🏻👏🏻👏🏻👏🏻

It's not an "informed debate" when others are policing another's language.