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?

Two of mine are adults with ASD, both have degrees and are coping well in the NT world.
Neither of them would change their nature, despite the challenges that they’ve faced and will face. It’s a tough road, but then I see parents with NT children facing all sorts of stuff I haven’t with their family. Parenting is always hard work, with or without a dx.

I've been thinking about writing some positive stuff about my wonderful 16 year old son, also Autistic. I remember the early days of reading online and so much is doom and gloom with no hope of a job and unlikely to get qualifications.

When I realised DS was rather different, it came to light strongly at playgroup at 2.5, I was rather scared. At 22 months he had a handful of words was quite behind but at 30 months was speeking in full sentences. It was like a flipped switch, time to talk!

Its been a different path to learning than his peers, but there have been some amazing highlights.

He developed at his pace. In yr 4, at 9 years old, he was off the bottom of the charts for expectations and refusing to mark make in main stream school with full time 1-1 support.

He's just come home from school, age 16 yr 11 having completed his first proper exam and with his gcse mock exam results from late last term. Mainly 9's and the odd 8 and I think 1 x 7.

We have challenges, but I have challenges with his NT brother age 14 too.

Albert Einstein was a famous late talker, rumoured to have no words before 4.

Speech and language are great. Its good to be in the system. Being in the system early only helps to improve outcomes.

Living with Autism has its challenges but if you like routine and able to establish one, routine days can go very smoothly. Society is getting better at minor adjustments and things like getting onto a plane first, not queueing for rides at theme parks, quiet work spaces, support in the classroom are all improving.

I can't answer your adult women question but wanted to shine a slightly more positive light on what one child with Autism has achieved. They're all unique and your lovely little girl who understands you and her Dad is still your lovely little girl who has an effective way of communicating for her for now.

Thank you both for your replies, I really appreciate it! Especially the perspective about parenting in general being a slog.

Right now, everything is fine and manageable because she’s a cute little toddler. She doesn’t have meltdowns, just normal toddler tantrums. She’s not bothered about a routine, she sleeps fine.

But so much of what I’ve read is like “Oh ho ho, this is the calm before the absolute shit storm”, making it seem like regular meltdowns, disturbed sleep etc are inevitable.

Oo look up nurturing nuerodiversity on Facebook. Both the lage and the group. A positive, invaluable resource that has changed my mindset completely. The lady who runs those also have a YouTube chanel under the same name and covers a lot of that limbo stage where you're not sure if it's asd or not and gives helpful tips and advice. Honestly, have a look

Also a lot of the information out there is very negative especially AutismSpeaks and things like that. Try to find what you can that is written by or made by autistic people themselves. Look at the #actuallyautistic hash tag on twitter if you have it. You can also look locally for groups. They sometimes run classes about some of the issues that come up in asd parenting. (UK that is)

Wow. Sorry. The *page not lage

Thanks Alexandra80 for the recommendations- you’re right about Autism Speaks, I wanted to go and play with traffic after reading some of their stuff. Only 16% of adults with ASD work full time you say? That’s not daunting at all, is it?

I don’t want to minimise the challenges, I just want to have a realistic idea of what life has in store for her/us.

I am an autistic woman

Bad things
Suffer badly from anxiety and depression
Come across as aggressive unintentionally
Struggle with new scenarios
Don’t generally fit in (but have learned to adapt to an NT world a bit)
Don’t know how to tell people how I’m feeling
I struggle a lot with friendship as I have no idea how others think (cognitive empathy)

Good things
I have a fantastic husband and two amazing kids
I am intelligent
Have a well paid job I love
I bring unique (and helpful) thinking to problem solving
I am very sensitive and caring when people are going through hard situations eg death (affective empathy)
I am a very loyal friend

I was late diagnosed which meant my teen years were awful (as I didn’t understand why I didn’t fit) and life has been challenging, but I’m SO much happier now I have my diagnosis and understand myself more.

If your daughter is autistic then she will benefit hugely from an early diagnosis.

One of her biggest struggles however will be other people’s woeful misunderstanding of what autism is. Books by Sarah Hendrickx, Lianne Holliday-Wiley are helpful.

DS only had 5 or 6 words at age 3. At 6, he has a passable vocab, not as fluent at speaking as his NT peers, but he's getting by and improving incrementally month by month.

I think the thing that I wasn't expecting is just how caring my son is. Whilst he doesn't fully understand the emotions of others, if he sees someone upset or ill he really wants to go all out to help them. He's such a loving child.

Our DS is essentially non verbal still at 2yrs 4 months. He's making some progress but I sympathise with how hard it is not to picture them aged 20, completely dependant on you, maybe unhappy etc. It's hard

I have worked with adults with autism (in transport) and I regard their talents as a superpower.

Check out the ‘Nurturing Neurodiversity’ youtube channel - the lady on it has a 3 year old with Autism and she speaks so warmly and positively about the experience. She has come from a place of real sadness to now being passionate about helping other parents celebrate neurodiversity. I came across her youtube videos by chance and her positivity has always inspired me. Worth looking at it if you have a moment.

I just want to say thank you so much for this post. Speech and language have recommended my 10 year old is assessed for autism and it's completely knocked me for six. I've totally been catastrophising and also hadn't read about positive outcomes previously. Autism Speaks had me in tears. It's wonderful.to hear some positivity.

I had no idea people still thought about autism like this! My kids are both autistic and I follow lots of pro-neurodiversity bloggers on Facebook (the natural response from me when friends find out their children are autistic is to say congratulations) - I can’t believe it’s still seen as a ‘catastrophe’. Shows how naive I’ve been by just following pro-autism people, I’m obviously living in a bit of a bubble!

One of my DDs is autistic. She's ace! She has changed so much in so many ways since her diagnosis aged 3 (5 years ago).

She's a sweet, kind, funny, gentle character. She marches to the beat of her own drum in the most wonderful way.

Of course I worry about her. How she will find her way in the world. But I hope she will continue to be happy, healthy and fulfilled.....just like my hopes for my NT children.

How old are your children, luckiest girl?
I’m delighted that you’ve only encountered the positives; that school, friendships, other parents, your child’s emotional stability and the wider world have all been great for you and yours.
But a natural response when facing an unknown that may impact on your much-loved child is to worry? To want everything to be lovely and fear that it might not?

Luckiestgirl, I am genuinely happy for you that your experience with ASD is so positive. That is fantastic in itself.

However if a friend congratulated me on dd’s potential diagnosis I would have go stop myself from kicking them in the shins.

Dealing with the actual symptoms and helping dd navigate through life will be one thing, but things like how other people treat her, the support she can rely on thanks to this current government etc are a huge source of my (and I’m sure plenty of other parents) worries.

I have a little boy age 8. He got diagnosed at 7. I have a few friends and know some others with children, teenagers and adult children who have ASD. One of the adults is studying medicine, made friends in his course, and is doing very well. His mother worried about him and he got interventions and cannot believe how well he is doing. The other adult man is finished a business degree, whilst working part time and has had numerous girlfriends. He has friends but struggles slightly. They were diagnosed at 2 and their parents envisioned awful futures for them. My son has his struggles with friendships but we try and guide him alone. Academically he is flying and is a lovely, kind, gentle and funny human being and far far easier to raise than his neurotypical siblings. Read neurotribes and check out websites that are positive about neurodiversity. I'm currently studying ASD in children and it is interesting when you see ASD as a difference and not a deficit. Some parents have greater struggles than me with their children and I acknowledge that but it is not all bad for everyone.

I have 2 very different autistic kids. The 19 yr old had very few speech sounds pre-school, used signing and had a lot of speech therapy (dyspraxia). It’s been a long journey but he’s back at uni today and isn’t home yet because he’s hanging out with friends after lectures. I’m sooo happy! My 11 yr old Dd is v different and didn’t struggle with speech but does struggle with changes to routine and making friends. She is a lot more angry but is learning to manage her emotions. I’m not looking forward to puberty with her (what parent is?) but know that she’ll be independent one day and will hopefully find her tribe just like her brother. Good luck with your Dd - all parenthood is quite the ride. I wish I’d had a crystal ball back in the day so I wouldn’t have worried quite so much about what was in store

My kids are 6 and 4. I didn’t say everything has been positive, the fact that they are autistic means that life can be difficult sometimes. But that’s nowhere near the same as saying autism is something to catastrophise.

The way I see it is similar to how parents reacted twenty (ten??) years ago to finding out their children are gay. They often thought it was awful and worry for them. Nah, sod that, congratulations! It’s not conventional, and it will make their life less smooth, but so what. Embracing difference is fantastic and should be done with bells on.

Yes they’re a different neurotype to the majority. No, that’s not a bad thing. And the more we stop seeing autism as a bad thing and get on board with embracing different neurotypes, then the more we can start adapting for them in society and the less the difficulties they will face will be.

Thanks luckiestgirl, that’s a really good way of looking at it.

It’s the uncertainty that I’m scared about. Do things get worse before they get better? Are regular meltdowns and crap sleep inevitable for every child?

I just find it so hard to think that the easy toddler I have now (apart from the lack of speech) is definitely going to turn into the stereotype of an autism child that I’ve read about online.

Ds has horrendous meltdowns, DD on the other hand doesn't.

One needed SaLT, one didn't. One is anxious, one gets angry. One gets into trouble at school the other does really well.

Two autistic children who are really different.

You just don't know and need to take it as it comes. Adapt to their needs, don't try to squash them into a NT mold. Don't overly restrict them either, different people can do different stuff.

op that stereotype is a narrow view of autism. Some children present that way. Some don't. Mine is sensory seeking. He wants to touch and be touched. Hes hyperactive rather than meltdowny but he does have the odd one. You learn what triggers them and can find ways around it (like visual timetables, taking a familiar object with them etc).

That stereotype isnt representative of every autistic person. This is why groups like nurturing nuerodiversity are so great. And looking for things written by other parents in the same boat and other autistic people. The fear mongering comes mostly from the medical field that ignores the positives and is terrifying for parents at the start of the journey into asd parenting.

27, autistic, have a very well paid job in an large global firm, the only one of my peer group to become a solo home owner in the South Easy before 25 and recently engaged to a man who loves me exactly as I am.

Also failed my 2 year check up due to lack of speech but it was more a refusal to speak than inability.

Never had meltdowns as a child (weirdly get them as an adult, but have coping strategies).

School was socially difficult (always felt different) but did well academically and had a small group of friends. University has been my toughest struggle so far, really found the transition to adulthood and independence difficult.

However, all this was without a diagnosis. Life got immeasurably better once I got the diagnosis and was able to understand myself. Agree with a PP that getting an assessment is the best thing you can do for your DD. A diagnosis is not a “label” or a prognosis, it’s the most useful tool to help your DD understand herself, the world around her and how you can support her best.

Thank you so much User- you have no idea how good it is to read something like what you’ve explained of your experience.

I will try to remember that Autism doesn’t need to be her label, just something that she knows about herself that will help her.

Thank you everyone who has contributed. You’ve made me feel so much more optimistic about what the future holds for us as a family.