Our son was diagnosed with ASD a week before his 3rd birthday...

[Takiwatanga]

AmA

What were his first symptoms?

Do you have any other children?

How has your day been?

Something I’ve always wanted to ask a parent of a child with asd is did you have any idea they might be different when they were a tiny baby? Thanks for doing this thread.

Unadventure - first symptoms were biting himself and not answering to his name, both before a year old. Looking back there was more, now I know what to look for, but I just thought he was a placid baby. I have a dd who is neuro typical. I wouldn't have anymore as I've been sterilized.

My day has been OK thanks for asking, I am working today, so missing them but enjoying the break too, haha.

Nutkins- the first symptoms we noted at the time were not answering to his name and biting his arm in meltdown. In hindsight I now see there were more as a young baby but I didn't realise the b, u just thought he was placid.

didn't realise then

I * not u, sorry for typos

How long was it from initial appointment to diagnosis?

My son is being assessed at the moment and it's taking ages.

Ellie it was over a year. We were very pro - active and I made many a desperate phone call to be pushed up the ladder so to speak. It worked. I have no regrets as we needed that confirmation as a family, we knew anyway, but having it confirmed was something we could look towards and keep us focused at such a scary and frustrating time. It was an incredibly hard time awaiting the diagnosis, you have my sympathies. It has got easier since then for us. Hold on.

Nutkins - coming back to your question, I guess I did know he was different in a way. It was such a strange situation as I wasnt concerned, but when it came to light he was a little different, it wasn't a shock, it was like we had known all along. Such a hard thing to explain. So I guess, in answer to your question - yes, and no!

What do you think causes ASD? Is it something you are born with or environmental? I've read about ASD being perhaps genetic, but I've also read that it can be caused by environmental factors, e.g. a possible link to too much lead being in the body such as from lead paint in older houses

Lava, I truly believe it's something a child is born with, or it happens in utero at the very least. Perhaps some kids acquire it, but I don't think that was the case with our ds. I've analyzed everything : unfiltered water, vaccinations, diet... I still believe in my heart he was born autistic.

I don't even think it's a question of 'if' with genetics anymore. It's rife in so many famalies, there's clearly genetic links. Also many genetic mutations are linked to asd.

Are you aware of the tensions between autistic adults, and parents of autistic children (at least the ones who aren't autistic themselves), and the differences they often have in mindset/approach/terminology to the topic?

How old is your DS and where on the spectrum would you consider him to be?
Do you have any support in place ?
My DS is 9 with severe ASD and I have DS11 with HF ASD.

Rosie - I am aware of the tensions, and try to be mindful of them. I hope this post doesn't offend. I often find it is hf adults speaking about their autism though, and to be quite honest the spectrum is so vast I don't think they can speak for everyone else on the spectrum...

Ice - he is highly impacted by his autism, he doesn't appear to have a learning disability though and can talk and connect well with those he loves.

Rosie - also want to add, I don't think parents can speak for everyone on the spectrum either! But quite often parents have to be the voice and advocate for their child who may be significantly impacted by autism in every area the condition affects.

I try to remember to say ASC, but often forget, as I believe disorder has negative connotations and autism is negative, it's a condition that can have negative symptoms, but many positives for many people.

Isn't *

Sorry to jump on the post but I wanted to say to @Nutkins24, I also just sort of knew from when DS was very little. First sign looking back was his inability or reluctance (we’ve never been sure which) to breastfeed. He just couldn’t or wouldn’t latch on. Then there was lack of smiling and a strange ‘hollow’ look. Strangely, as he got closer to 1yr he seemed to smile excessively but at nothing in particular. He didn’t laugh at silly things his siblings did but would laugh as objects and often in his sleep. I was fairly certain he was on the spectrum by the time he was 1yr as he was my youngest but the lack of pointing, showing and sharing in that 2nd year really cemented it.

Oh and he also stared at his hands all the time and twisted them around. And he was extremely passive. He’d lie under the baby gym and never attempt to reach for the dangly things. I knew that wasn’t right having had 2 NT children previously.

A little - yes I totally get the passive thing. Our ds was a dream baby, so passive and calm compared to our roevious DC. Then all hell broke loose at 10 months and he became a biter and screamer, was so shocking and utterly heartbreaking to see him so angry. The transformation still shocks me to this day...

Can I just say a massive well done for getting your DS's diagnosis when he was so young, though it must have been heartbreaking.

My DS was born 16 weeks prematurely so has been under Children's Services since the day he was born, but it took until he was nine and a half years old to get his ASD diagnosis confirmed....in spite of it being (in the words of the paed who finally diagnosed him) "extremely obvious"....!

Thank you, catkin. ❣️

What can other people say that helps? I have a friend who thinks her DC's autism is her fault. It was such a loopy thing to say that I barked out laughing & told her to pack it in, but she still has that nagging doubt.

What are your worst worries about the future?

How do you discipline him?
What are his triggers?
Is he at nursery and what accommodations do they make?
Do you have a sensory box?
Who diagnosed him?
What therapy does he have?
How do you manage going out?
How does it affect DD/ What is the age gap?
Have your family accepted the diagnosis?
Describe a typical day.

Thanks in advance OP x

My daughter was also diagnosed at age 2yrs 9mths, and my son at 11yrs 8mths (opposite ends of the spectrum) it makes such a difference when they get an early diagnosis and start getting the help and support they (and you!) need

Do you or your DH have any ASD traits? You’ve said I’m you believe there is strong evidence that it’s genetic and I would agree from the families that I know.
My DH shows some very mild traits and I although I function fine I sometimes realise that actually I probably am close to the bottom end of the spectrum too. I worry that we will find that DS is on the spectrum and more seriously so than either of us as he gets older.
Do you get upset / annoyed by people using the wrong terminology? I’m honestly a bit confused by it but really wouldn’t want to cause offence.