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.

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

Not completely.

I have a real issue with the fact my ds diagnosis has the word spastic in it and people telling me I can't use that word

Obviously calling someone a spastic is totally NOT ok.

But the word itself shouldn't be made so taboo on the basis others have used it as an insult as that causes further issues.

Language doesn't necessarily evolve. It's use does.

Just popping in to say do have a look at the studies relating to language development and FRAA. My autistic and largely non verbal son was diagnosed with this a few years ago and has been treated with supplements of calcium folinate by the NHS (actually a real therapy, not some kind of snake oil). Had we been able to start this earlier his language gain would have been even better. Do PM me if you want further details. My ds has a lot of speech now.

Just wanted to say to OP that in my autistic DS1’s case, autism doesn’t run in the family. I believe that it nearly always does have a family link, but can also be caused by very significant birth trauma (I may have used the wrong phrase here). My DS was born extremely prematurely (at 24 weeks) and has autism, ADHD and a bunch of compelling extras as a direct result. We have been told by all of his medical professionals that his neurodiversity was caused by his extreme prematurity. We know a few other extremely premature children, and all except one also have autism without it running in their families.

There was of course the occasion a few years ago when I mentioned this on MN and was accused by a charming poster of “talking shit”. Then someone else popped up and said “well my premature child is my only one without ASD so I don’t believe you either.” 🤦‍♀️ That was a fun afternoon.

I wish you and your lovely DS the very best, OP. My son is 18 now and it hasn’t been at all easy. He attends a special school and college and is highly unlikely to ever live independently. I hate that life is so hard for him and if I could take these struggles away from him then of course I would. But he’s bloody wonderful and charms everyone he meets. And as the many more positive stories on this thread demonstrate, every autistic person is different.

Are you really equating OP saying "DS has been diagnosed with autism" to calling someone one of those names?

I do understand the reasoning for the terminology as you've explained it, but I also feel that insistence on just one preferred form is disrespectful to those who like to describe themselves otherwise - as a pp said they did for example. Autistic people/people with autism do not have a hive mind you know.

Fair enough to let OP know what many autistic people prefer and why - that might be helpful - but the comment I've quoted above goes much further than that doesn’t it? And that's not fair.

I also wonder why we don't see the same sort of controversy about other neurodiverse conditions. People generally describe themselves or others as 'having' adhd for example, and they're not jumped on for it.

The OP is the child’s mother - she can choose any way to describe it as she wishes. I know many children / parents where one or more of their children have a diagnosis. Some parents call it ASD, some call it autism, or say their child ‘has autism’. Some don’t use the term at all and prefer to say their child has Communication and Interaction difficulties.
There are many ways to describe it - please don’t tell people what they should use in their own particular situation.

If you phone up to get an application form for DLA, your claim will be backdated to when the form is sent out. Be aware though, it can take an absolute age to get through! You can also apply for carers allowance.
Are you thinking your DS will go to a mainstream school or would you prefer special school? It’s far easier to get a reception place in special from the start rather that thinking ‘I’ll try mainstream and if it’s too much we will apply for special’. By that point it would be an in year application and therefore almost impossible to get.

No of course not, I was making a general point in relation to something someone else said about language.

Okay, your comment came across otherwise I have to say.

It's an individual preference and nobody has the right to decide what someone else might find offensive or uncomfortable.

Being described as 'autistic' for some people isn't preferred as it sounds like it defines them.

'Having autism' to some people sounds like they 'have' something like a disease.

Are you thinking your DS will go to a mainstream school or would you prefer special school? It’s far easier to get a reception place in special from the start rather that thinking ‘I’ll try mainstream and if it’s too much we will apply for special’. By that point it would be an in year application and therefore almost impossible to get.

Good advice from @Soontobe60 (am I right that you are a senco?) but I wanted to add that my son’s experience was different to this. He had full-time 1:1 support in mainstream for several years before moving to a special school. In our area there are very few schools that specialise in autism, and the local LA specialist provision wasn’t suitable for him. Plus our LA was never going to find a special school place for him until we could prove that mainstream wasn’t suitable. 😢 There’s always going down the tribunal route of course….

Oh and my son (who is now 18) prefers to say that he has autism.

Just to say getting a place at special these days is really really hard. I know 5 children with high needs across two boroughs who have been rejected. All non verbal. Maybe it's worse in London. But defo get ehcp ASAP

Four Grandsons age from 18 to 8 all on the spectrum.. everyone different.. all have physical problems too.
All have been or are home educated due to their mental health.
All highly intelligent and above their peers.
All were diagnosed before the age of 7.. youngest was just two years old.
I would not change them for the world... but l wish the world would change for them.

DrRuthGalloway. Do NOT speak for me.. you are so wrong.
Get your facts right.

I've got an autistic 19 year old (semi verbal and severe learning difficulties) and an high functioning 9 year old.
It's a lonely journey at times but also very rewarding.

OP it's tough in the early days as I found I was also thinking "what should I be doing" I kept thinking I should be doing more to help him. If it's any help my son at eight is a world away from how he was at three. Socially and academically he is now starting to thrive after a very rocky start. Have you started looking at schools? That's the most important thing. The right school and setting can be a total and utter game changer

My facts are right.

The (significant ) majority of autistic people in polling consistently want this language. As I said in my initial post.

This is true in polls conducted in the UK, USA and in the Netherlands at a brief glance online. It is also true in neurodiversity education and in neurodivergent populations I work with, in my autistic family members and in the autism diagnostic service I have worked in for 20 years.

I was obviously wrong in my initial post about risking a pile on if the person-first terminology was used. This would be the case in most neurodivergent led forums. However I do think now this point has been made by at least 7 or 8 different posters that the message has been given, but feel free to add another lash to the whip if it makes you feel better.

The issue with the polls,@DrRuthGalloway, is that only a subset of autistic people are in a position to give their opinion. And that's true of the neurodivergent-led forums too. Arguably, these (often more able) people are the ones more likely to view the condition positively and identify with it personally and see it as a good thing.

A lot of carers of profoundly disabled autistic people have issues with the 'autism is awesome' rhetoric and see autism as something that their loved one 'has'. And at least some autistic people who do express an opinion see it this way too - as something that does not define them.

There isn't a one size fits all.

Regardless of what the polls say (and really, how scientific can they be when they're using self-selecting data) people should be free to use the descriptor they feel describes themselves or their family member best.

If I were addressing a group at an autism conference, then yes, you'd have a point and I'd use 'autistic'. But the OP was talking about her own son and that's very different. Correction is not needed.

It is also the case that some ND people do not feel welcome on some of the sites conducting the polls because anyone on those sites with differing views is rounded on so the surveys are not representative even of the subsection of the population with ASD/autistic population who can give their opinion.

3 with ASD diagnoses in my houses. One prefers with or has ASD/with or has autism and does not see ASD as part of him, but rather as another condition just like his other medical conditions. One prefers is autistic. I switch between the two.

I left many sites/pages when I realised they are just full of vicious people trying to dictate how other people live.

I actually do use 'autistic' and quite strongly dislike 'has autism' but I will defend people's choice to the absolute end.

my houses

I would just like to clarify I only have one house .

This made me laugh so much

The (significant ) majority of autistic people in polling consistently want this language. As I said in my initial post.

This statement is impossible to verify. Think about the subsets who are (and who are able to) respond to such polls. Read the excellent posts on here which address the problem with these polls.

@Clareypoo sorry to jump on but my ds is 3.5 and was recently observed by SENCO at nursery as withdrawing in group activities with peers and making no friends and preferring to play alone. No referrals were made by the SEN lead but I've recently wondered if I should approach GP for an assesment or second opinion.

May I ask where any of the below indicators -
Sensory issues with clothes, rolls sleeves up
Walks with t rex arms
Clever
Excitable and often shouts out in public
Struggles with social cues
Tells people to be quiet if watching or listening to something
Used to bolt but getting better

Other then that he is a happy go lucky boy, lots of smiles, eye contact, no repetitive behaviours or interests, doesn't like things up. I struggle to know if it's something or not the suggestion by the nursery has kinda knocked my judgment even though it didn't progress to anything further.

Thank you for your helpful post I'm sure it will help a lot of people