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Hope as we await ASD diagnosis

7 replies

moonbug9 · 19/02/2025 14:54

Hi, I was hoping to find some support on this forum and advice on how to move forward. We are going through the process of getting an autism diagnosis for DS, who is 2.4. I was worried about his speech delay and understanding, but didn’t consider autism until the health visitor flagged that he’s not consistently responding to his name at his two-year developmental review. I didn’t really understand autism and assumed that he couldn’t be diagnosed because he is so affectionate and often seeks out connection and playtime. We have a number of (nonverbal) inside jokes that send him rolling on the floor laughing and he often looks up at me and smiles when we get to his favourite part of a book, etc. He loves travel, new places and being around people, especially loved ones. I understand now that I was wrong in those assumptions. His nursery have always been very fond of him and only after talking to the HV have they flagged that he doesn’t consistently respond to his own name and sometimes is in his own world, not making eye contact. I have moments where I convince myself that he “only” has a language delay, encouraged by well-meaning family and friends, only to come crashing back down and find myself grieving all over again. I really don’t mean to offend anyone with my negativity – I hope to come to a place where I will celebrate DS’s neurodiversity and focus on his strengths and progress.

In the months before his two-year review, I was so in love with age two and how silly, loving and cuddly my boy is. I have always called him my perfect little boy and love being his mom. It makes me so sad that my enjoyment of him has been clouded by worry these past couple months. I know that he is the same boy he was then and I want to cherish every moment of his childhood. It’s just so hard not to worry and to accept that life will be different to how I had imagined. I feel angry that DS’s life will be more difficult and that he’ll struggle.
Does anyone have any advice on how to cope, or positive stories to share? DS is starting private speech therapy next week – he has shown more interest in saying new words recently, so I hope he will respond to SALT well. He even joined words for the first time. He has had a hearing test (glue ear in one ear, but overall hears well). I have also started therapy myself, but the therapist doesn’t understand ASD and I wonder if it will actually be helpful. I am in a better place than I was a couple weeks ago, but I still feel deeply depressed. I spend a lot of time reading forums and Googling autism, receptive language delay, etc. – sometimes I come across stories that give me hope and sometimes I feel crushed by what I read. I know that this isn’t healthy behaviour, but I just don’t know what to do with myself. If you’ve read this far and do take the time to respond, thank you so much 😊

OP posts:
StrivingForSleep · 19/02/2025 17:32

What you are feeling can be normal for some.

Would it be possible to try another therapist?

Some people find looking for a local group for DC with SEN helpful.

Googling isn’t helping you, so I would try to avoid it.

CL2208 · 19/02/2025 18:40

Hello, I have 3 children, who are now all diagnosed with autism and other various co-morbidities. It honestly really is a huge spectrum, but they all have their own personalities and are all different in various ways. I get the guilt thing, as I had similar experiences with my eldest who had a late diagnosis. It can be hard at times, but I would say just to enjoy and focus on the positive interactions and also to maybe consider joining some sort of sen support group. I found it so invaluable to interact with others who had children with SEND. I hope you can also find some time to relax and concentrate on your own wellbeing.

moonbug9 · 19/02/2025 20:04

Thank you both for your responses and advice. I will definitely look into support groups.

OP posts:
artemru · 26/02/2025 23:34

Hi
You right now where i've been 4 years ago.

Please stop Googling!! i have done the same and it WILL dmage your menthal health if you not stop. your quote:

"I spend a lot of time reading forums and Googling autism, receptive language delay, etc. – sometimes I come across stories that give me hope and sometimes I feel crushed by what I read."

Health visitor is not always developmental pediatrician.Your quote:

"health visitor flagged that he’s not consistently responding to his name at his two-year developmental review"

So to resume: He is not constantly making eye contact and not always responding to his name,and have speech delay at age of 2.

Is this is reason you think its ASD?????!!!!!
Well thats what probably google told you,and all those kind of "mothers heart knows better " kind of stories from internet.

My story here:

My son (and yes boys develop slower especially in speech and communication in general) haven't start talking untill his 3rd bday , at age of 2 barely reacts to his name ,been in his own world , eye contact only occasionaly.Yes we went trou OT and SALT. His developmental pediatrician told me that he not see any autistic traits and all kids developing their own pace.When pediatrician said that to me I was so sure that my son have ASD that i even didnt take his opinion seriously because how they say "mothers heart knows better" (no).

Skip to nowadays:
My son now 6yo in Year 1 his english sometimes better then mine, studiyng very well even been nominated to do speech(!) on behalf of our school kindergarten classes.
He doing sports and have many friends.

So please stop googling!! Enjoy your time with your child.

And again: STOP GOOGLING!!!!!!

GiraffesAtThePark · 27/02/2025 14:51

I agree that you should stop googling. I have a 3.5 year old son who has had issues with language and is due to be assessed soon after being on waiting list for a year. His language has come on a lot in the past few months. Last year I was so worried he’d never speak and was googling and reading stories about that.

moonbug9 · 03/03/2025 21:38

artemru · 26/02/2025 23:34

Hi
You right now where i've been 4 years ago.

Please stop Googling!! i have done the same and it WILL dmage your menthal health if you not stop. your quote:

"I spend a lot of time reading forums and Googling autism, receptive language delay, etc. – sometimes I come across stories that give me hope and sometimes I feel crushed by what I read."

Health visitor is not always developmental pediatrician.Your quote:

"health visitor flagged that he’s not consistently responding to his name at his two-year developmental review"

So to resume: He is not constantly making eye contact and not always responding to his name,and have speech delay at age of 2.

Is this is reason you think its ASD?????!!!!!
Well thats what probably google told you,and all those kind of "mothers heart knows better " kind of stories from internet.

My story here:

My son (and yes boys develop slower especially in speech and communication in general) haven't start talking untill his 3rd bday , at age of 2 barely reacts to his name ,been in his own world , eye contact only occasionaly.Yes we went trou OT and SALT. His developmental pediatrician told me that he not see any autistic traits and all kids developing their own pace.When pediatrician said that to me I was so sure that my son have ASD that i even didnt take his opinion seriously because how they say "mothers heart knows better" (no).

Skip to nowadays:
My son now 6yo in Year 1 his english sometimes better then mine, studiyng very well even been nominated to do speech(!) on behalf of our school kindergarten classes.
He doing sports and have many friends.

So please stop googling!! Enjoy your time with your child.

And again: STOP GOOGLING!!!!!!

thank you for your response! That is amazing that your son is doing so well now! That's really wonderful to hear. I have stopped Googling and feeling much better for it.

OP posts:
moonbug9 · 03/03/2025 21:40

GiraffesAtThePark · 27/02/2025 14:51

I agree that you should stop googling. I have a 3.5 year old son who has had issues with language and is due to be assessed soon after being on waiting list for a year. His language has come on a lot in the past few months. Last year I was so worried he’d never speak and was googling and reading stories about that.

thanks for sharing. That's great that your son has made so much progress!

OP posts:
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