ASD: Please help me not to catastrophise!

[ThinkPositiveThoughts]

Posting in Chat for traffic- DD (2 yr 3 months) had her Speech and Language Assessment today.

The therapist raised the possibility of her having ASD. Her shared attention is fleeting and her language skills are behind where she should be, with limited speech. Her understanding seemed to DH and I to be ok, but turns out she uses a lot of visual cues to determine what we want her to do.

I’ve had my suspicions for a while because of Google, despite GPs and HVs telling me I needn’t worry. I really pushed for the assessment even though they thought I was a bit bonkers.

I got quite upset afterwards, I’m so scared for her. The therapist was lovely and gave me a hug and said that she will definitely talk and she’ll be fine even if she gets a diagnosis.

I’ve tried looking for support online but everything I see is so doom and gloom about ASD- which is natural I suppose, no-one is going onto the SN support board to crow about how well their DC is doing. I know she’ll have challenges, but I want to try and face this with optimism and focus on helping her reach her potential.

Can anyone give me some perspective on living with ASD? Especially as a grown woman with a speech delay as a child?

What’s wrong with autism being her label? That’s like saying “ok I’ll accept my daughter is a lesbian, it doesn’t have to be her label”. Being autistic doesn’t make you less valuable. It’s a perfectly valid neurotype. Embrace it.

Sorry, I don’t mean to be snippy. I remember having very similar thoughts as you’re having when my kids first got flagged for autism.

Well just as I wouldn’t want any child’s defining feature to be “the lesbian girl” or “the boy in a wheelchair”, I don’t want people making assumptions about her purely because of her ASD.

Yes, it will impact on her personality and how she engages with other people, but as User pointed out, it’s great that she’ll know why she’s good at some stuff but struggles with other things without lots of self reflection in later life.

Look up Sarah Hendrickx on YouTube for her videos on the difference with girls with Autism. She is wonderful, very funny.

Greys Thunberg. What a fantastic girl. She says how much her ASD has helped her.

I'm autistic. I have a degree and a dh and two autistic children. Autism is not the end of the world. It makes some things difficult but other things easy. Everyone with autism is different. My son and I had delayed speech. He made up his own sign language. Embrace the positives, accept the difficulties. Get as much therapy as needed, know your dd's rights, the Equality Act will protect her from discrimination and research as much as you can about asc and it's comorbidities so you can support your dd.

I don’t want people making assumptions about her purely because of her ASD

You don't have to tell anyone your DD has ASD, only your GP needs to know. School only need to know if you want them to put interventions into place, if you want to apply for an EHCP, the LA need to know. Come time for Uni, Student Support can help a lot, but they need to know. Employers need to know only if you want them to make reasonable adjustments.

Apart from that, no-one else needs to know.

It's her medical diagnosis, some kids don't like anyone knowing they have a medical condition/invisible disability.

If she's aurtistic, she's autistic, a dx will not change that, she'll be herself with or without it, although with it she'll get more support than without.
Her presentation of her autistic traits will change as she grows, your understanding of how her autism affects her will change as she grows and like any parent with any child, you'll have great days, good days, meh days and off days.

If you do decide to tell anyone and they go on about her having "a label" just point out that Autism is a medical diagnosis not a label you can stick on a jar of jam or a suitcase and peel off on a whim.

Oh, and about the only thing my two have in common is an ability to sleep anytime, anyplace, anywhere that started around 2 months old.
We see a diagnosis as an explanation, and a key to unlock all sorts of possibilities. Hardest time with DS was up to 14, with DD, it got very tough around 17, and has smoothed out since around 25ish. Social issues mostly.

I once went to a talk from this wonderful person, you may find her website and resources helpful 🙂
www.robynsteward.com

*Autism is not the end of the world.

When I was with the SLT I told her that this is what I needed to hear. That just because she’s wired differently it doesn’t need to be a negative thing.

She said that some parents don’t want to hear that because it can seem patronising. But it’s what I need to hear right now because 90% of the information out there is talking about risk factors and red flags.

90% of the information out there is talking about risk factors and red flags

Stop reading it, I've no idea what you are actually reading, but you're like someone who is thinking of seeing a horror film then before you do, deciding on spending a night in a creaky old house in the dark during a thunderstorm. Then wondering wide-eyed why you're terrified. You are cranking yourself up into a state of panic verging on hysteria over nothing.

Stop it.
Step away.
Calm down.

Learn that different is NOT equal to wrong. Differences should be celebrated. Apple and Windows can both do similar tasks, they just do them differently. Neither are right, neither are wrong, they are both computers.

Also autistic, with an autistic child. Mine has plenty of verbal speech but is set to broadcast not receive - she doesn't use visual cues or body language so is reliant on what people say rather than how they say it..... if she's paying attention at all. She also has loads of strengths, she's got a fantastic sense of humour, she loves music and dance, she's a killer Dobble player and has a strong sense of fairness.

My strengths and weaknesses are very similar to Scautish except I am over compliant rather than coming across as aggressive. I was also dx as an adult and I wish I'd had the 'label' as a child, because the labels I was given instead were rude, defiant, "pert" (on my school report!), weird, unfriendly, impertinent, daydreamer, away with the fairies, and similar uncomplimentary terms.

All children on the spectrum are different, just like neurotypical children. If I ran an organisation called Neurotypicals Speak I could throw out some terrifying figures...... 80% of prisoners are neurotypical or have neurotypical traits, research finding that there are neurotypical families who have generations of unemployment, the proportion of neurotypical women who experience domestic abuse, etc.

Regular meltdowns and disturbed sleep are not inevitable. And whatever challenges your DD does have, you'll find a path through, just as you would with a NT child.

Thank you Laura, it’s amazing to hear about your daughter’s strengths. There’s so much focus on what dc with ASD can find hard that what they can do and their qualities are rarely mentioned in a lot of literature.

Thank you everyone who has taken the time to reply- it’s really changed my thinking and massively helped!!!!

I'm autistic with 4 autistic children ... we are all so different in the same way neruotyoical people are. My eldest and youngest am have been a dream to raise in terms of perfect behaviour, both love sleep, both are kind and seek affection. My middle 2 struggle massively with emotional regulation, behaviour and my 3rd in particular hates sleep . They range developmentally from typical to severely developmentally delayed but each have unique strengths of character I'm super proud of them!

Sometimes I feel like there are those parents who have autistic high functioning kids then there are the ones like my daughter who need so much support that sometimes it is a little suffocating.

There are lots of positives to being autistic, I like the way she thinks. I just don’t like how hard it is to maintain her happiness in the world.