Autistic parent support

[EmotionalSupportAutie]

I am involved in setting up a project that will offer support to Autistic parents, initially from pregnancy to the child reaching the age of 3. I have my lived experience to draw upon but I would be very grateful for anything anyone else can contribute. Are there supports you wish had been available for yourself? What would make that parenting stage easier?

Great idea. I've got a 6yo and an 8mo, and am currently awaiting diagnosis.

I struggle with wanting to establish a routine, but having to listen to friends and professionals advising me to be baby-led. I really value explicit advice, such as the dreaded Gina Ford, but actually hide the books from visitors because of anticipated dissuasion. Having parenting support that understands my need for routine would be invaluable. I would also appreciate guidance in building routines around my family and support for when they aren't working, as I have felt overwhelmed and, at times, incapable as a parent.

Also, I really struggle with prolonged crying. I feel awful for it, but it is so hard to cope with. I relied a lot on my DH taking over. My DS2 had reflux and his crying really affected my ability to bond with him. It is much easier now that he is older and I can differentiate his cries, but at the early sleep-deprived stage I was barely coping. The guilt and shame meant that I didn't really tell anyone (other than DH) how difficult I was finding it to cope. If there was support for this sensory aspect of having a baby, I would really appreciated it.

Would love to hear more about this project.

Thank you so much for taking the time and spoons to reply. Interestingly, I was very much in the same position as you with prolonged crying and quite often would result in meltdown for me. I'll definitely come back and tell you more once we are further along in development

I'm 47 now and my baby is 16, but when she was very little what support would have been good is if the Health Visitors etc would have listened to me and taken my concerns seriously not fobbing me off with guesses when DD wasn't feeding properly.

I had a nervous breakdown because I need a lot of quiet alone time due to my autism and I didn’t get any at all. What I needed was childcare so I could have time to just sit silently and be left alone.

Thank you to both of you! It's really helpful to hear different experiences.

What a great idea!

I would benefit from having a network of people who I could speak to who understand and go through the same things as ND mothers. I haven't told any of my friends that I am autistic and I don't really go into the details of specific struggles - it would be nice to feel like there was a group who I could be fully authentic with. I struggle with feeling totally alone in this experience to be honest.

I think help navigating anxiety around my own children's development would also be helpful. We are often told that our children may end up with autism and I really overthink this.

One of the things I struggle with the most is obsessively researching every detail and worry about parenting, especially in the early stages. I used to get myself into such a pickle looking at all the different ideas and theories - and by that point I was completely overwhelmed with conflicting information about everything from weaning to sleep training. I also would read a book and then think I had to follow every detail to the letter and when I didn't I felt like a failure. Perhaps some sort of pool of information that breaks some of the big ideas down into manageable chunks would be helpful? Talking the research out of our hands to some degree?

Tips for comfortable clothes and baby accessories (such as slings) would be great too. I really struggled with maternity clothes.

I am sure I will think of more but these ideas quicky came to mind!

I just remembered another idea that I always wish I had - scripts for different scenarios. Good things to say in certain situations that we all come up against - including praise and setting boundaries. Something to work from - I know what kind of parent I want to be but sometimes find it hard to think of the words.

For me personally, I always knew I wanted to do 'gentle parenting' but when it comes to setting boundaries I found it hard to get information about what that looks and sounds like. If I just had a page or two of ideas for things I could say within that style of parenting it would help.

good idea.

not sure what I would have needed.

dd was a high needs baby. ex was fucking useless. we bonded as she needed me and cried a lot. I had help with attending appointments.

Amazing! Thank you so so much for helping with your experiences too. I'm sad there hasn't been that support but hopefully it will change.

@BlackeyedSusan I'm sorry you had that experience with your ex. That's frustrating. Glad to hear you had some support to attend appointments - that seems like a valuable support.

He's a bit more useful now. He gets to stand on the side of a football pitch in wonter

What a fantastic and valuable idea!

im just on the cusp of TTC. Can think of few things such as help with navigating the school system, clear directions on how to behave in baby groups etc. maybe settling fears of autism being passed on ? Can this network also be open to ADHD people as well ?

I have autistic parents. I had a truly miserable childhood and now I have nothing to do with either of them.
the problem is they can’t even see just how terrible they were.