DD ASD diagnosis while I'm 6 months pregnant

[Alice0703]

Hi everyone,

I’m in a bit of a tough spot and really need to hear from others who might have been in a similar situation. My dd, who’s 5, was diagnosed with ASD last month. I’m also 6 months pregnant with a baby boy, and this has hit me hard. I love my dd to death, and though I’ve always known she was unique since she was a baby, her ASD diagnosis came as a surprise, especially because she’s so linguistically gifted.

Her cousin has ASD too, but he’s nonverbal and their behaviors are quite different, which initially led me to believe her challenges weren’t ASD-related. Now, I’m worried about the genetic factors and the increased risk for my unborn son, especially given the recent studies I’ve read about ASD risks in siblings, and the higher risks if the old sister is affected.

Tbh, if I had known about my dd's ASD earlier, I might have reconsidered having a second child. But here I am, trying to navigate these complex emotions while preparing for my baby boy. My husband and I both have demanding jobs, and with his frequent travel, I often find myself managing things solo. The thought of potentially raising two children with ASD without much family support is overwhelming, and I fear it might mean that I'll have to quit my job which I really love. As dh earns well and can support the family if one of us needs to stop working to take care of the kids.

I’m sorry for the long post. I guess I just needed a space to express what I’ve been going through. If anyone has gone through something similar, I’d love to hear your experiences and how you coped. Thanks so much!

Your child hasn't changed just because they've given her a diagnosis. Presumably you've been happy for the past several months to bring a new baby into your family? Why should a label being put on your daughter change that?

I won't pretend having a non verbal asd child has been easy but he has enriched my life in so many wonderful ways. My ds is an absolute dream, even with his challenges. IF your child has ASD, you'll only ever know them as they are if that makes sense. So you won't know them differently. I actually can't imagine my son any other way. He's wonderful as will your new baby be

It's not a label
It's a signpost to where to get help
Now you can be more direct in helping her ,school will have an idea of what her likely struggles will be.
I'm diagnosed autistic,I've 3 DC with diagnosed autism,life goes on ,
You have a brand new baby on the way op , that's wonderful, anything else can be dealt with at a later date

I disagree with the first reply. Whilst your daughter hasn't changed, your reality has and you are at a point where you don't know what the future holds. Be gentle with yourself and try not to worry about what ifs. Ask yourself what the reality is now and worry about that.

You have a relatively early diagnosis which can be a positive thing. Get support for you and your family, and ignore well meant but poor advice.

You say you weren't expecting it - but surely you were expecting something? For her to be diagnosed at 5 there must be relatively significant challenges as it's not easy (particularly for girls who often present very differently to autistic boys) to get a referral, never mind a diagnosis, and it's not a short wait for referrals either so presumably has been going on for a while?

Your daughter isn't any different to who she was 2/6/12 months ago. You just have a reason for her differences now and knowledge is power.

I have one child who is quite affected by his autism but he is truly delightful. I would love a second and he'd be an amazing big brother but my health means another pregnancy is too much of a risk.

At the end of the day you get the children you get, you dont know what life may throw at you. Instead you embrace the positives and work through the challenges, regardless of what they are because that's what we do as parents.

Hi asd isn't the end of the world, but it is always still a shock to recieve the diagnosis even when it's expected. All three of my children are asd, one is mainstream and will lead a relatively *normal life with extra prompts and support my last two will never be independent. Our lives have been forever changed but honestly for the better. Do as much research as you can, remember that it's you that knows your child best no child with asd is the same as the next one. I was 8 month pregnant with my 3rd when my second was admitted to hospital for 6 weeks very poorly and now has a feeding tube so had to balance a newborn with a tube fed child that was unexpected it was a total stress blur but I don't know how you do just seem to manage I feed from the strength they give me I didn't want to lie and say don't worry about it, your about to go down an unexpected path and that's something everybody grieves and stuggles with whether it's due to a different career, partner or parenting experience. It takes a while to find your feet again and that's totally OK. Build yourself a support system whether that's friends and family, online support or sen groups. You are going to be OK even if not today, you will find your path.

I suspected my eldest was autistic at 18 months, just when I found out I was pregnant with my second. However he didn’t get a diagnosis until he was 7, one month after his younger brother got his. I have a third child who is already having continuous assessments just to keep an eye on things. It’s not always hereditary but yes, it’s certainly a possibility. In our case, we eventually recognised that their dad wasn’t just a bit ‘eccentric’ but our kids also got a lovely bit of ADHD from me so what can you do 😂. I’d not go back and change it, but I’d also absolutely not have another child even if it was possible now.

I’m a single parent (still coparenting) now, and yes it’s hard and tiring. I have found that having friends who are also parents of SEN children is a life saver. We’re always talking about things that only SEN parents get - other people really really don’t ‘get’ it. Having supportive schools is a must, I’ve had experiences of great schools and unfortunately an utterly awful one. It’s worse when your child has what is wrongly considered ‘high functioning’ autism (my eldest), even with a diagnosis they have often unrealistic expectations of what your child can manage day to day.

Take time to digest the diagnosis. Even when you absolutely know your child’s autistic it can come as a shock to the system. I knew my middle son was autistic from very early on, has global delays, has never developed beyond toddlerhood and I still fell into a bit of a black hole when I was told officially. The future is a very long thing and it’s very easy to feel guilty and worried about the life we created for them. But with the right support for them and for you, it will get easier and less scary.

Thank you all for your kind words; they really give me strength. I know I should focus on the present and support dd rather than worry about the future, but it's sometimes hard not to, especially after receiving her final diagnosis recently.

DD has had anxiety from a very early age, first noticed by her daycare teacher. She also developed eating disorders, which concerned her HV. Her HV also observed some behaviors that seemed to fall into the ASD category. Although unsure at the time, she suggested an assessment, mindful of the long waiting lists. She made the referral when dd was only two years old. After turning 3, she improved significantly, turning into a happy little girl. This change led me to believe that her earlier symptoms weren’t ASD-related. That’s why, 3 years later, her diagnosis came as a shock. The pediatric psychiatrist told us the difficulties she might face outside the home, which we were completely unaware of, and mentioned big challenges she might face during her teenage years, which is heart-wrenching to consider.

My husband is still coming to terms with her diagnosis. I understand where it comes from; she shares many of his traits, which means he might also have undiagnosed ASD. He is very proud of his career achievements and resists the label of a disorder, seeing it more as a diversity aspect. He questions the assessment process, feeling it unfair to draw conclusions from a only 1.5-hour observation, especially since she’s only 5 and can’t fully express herself. He feels the assessment should include longer observations in various settings, as people behave differently in different scenarios, and such a short time in an assessment room may not provide enough reliable data for a definitive diagnosis. Opposite to my husband, While I was a bit surprised by the final diagnosis, I actually agree with the doctor’s observations, as they match many of my experiences with her.

I guess we just need time to process this and figure out the best way to support dd, particularly with the potential social challenges she might face as a teenager. It’s a worrying thought, but I guess everyone faces their own struggles, with or without ASD.

I know she will be an amazing big sister; she already taken her role, kissing my bump, talking and reading stories for her unborn brother everyday!

Thank you again, everyone!

It is a shock. My eldest was diagnosed much later. He has friends, a partner and is a fifth year medical student. He has a part-time job doing admin work in a hospital. He has lived away from home for university for some years. He is very high functioning and has learnt social skills. My eldest turned out do much better than I feared. My husband is ASD though never diagnosed and had a very successful career. He never quibbled over the diagnosis. He has been very supportive of our eldest.

He finds our ADHD youngest much harder to understand. The ADHD comes from my side. Yes, I have a successful career and professionally I am known for my organizational skills. I was never diagnosed as a child but it's very clear to me that I share some very similar traits to my youngest. Yes, diagnosis helps but years ago people just got on with it. In some branches of some sciences, especially the hard sciences like maths, it would be more normal than not to be on the ASD spectrum.