Published on 12, July, 2020
I've come to this page because I need help - we need help.
My 8 year old boy who was born VERY premature was finally diagnosed with asd and sensory processing disorder this week, to go with the existing diagnosis of anxiety and growth hormone deficiency. His behaviours (80% of them to do with his asd and anxiety) have really affected the family dynamic. My wife can't cope anymore and the last year has been tough all around.
Although we are relieved that we now know what we are dealing with, since his diagnosis things seem to gave got much harder. We don't know what to do. I've shown my little boy some age relevant videos relating to his diagnosis, I've read him books related to anxiety and autism, but I just don't know what to do besides this. My wife thinks we should separate so that we can both have a break from our sons challenging behaviour by sharing our time with him, but I want to fight for our family.
Now I understand why my son behaves the way he does, my anger at his behaviour has turned to (I'm ashamed to say) pity. I hate that I feel sorry for him, and I hate myself for ever being angry at him. My wife's at a different stage and she just can't cope and this is causing more of a rift as I'm trying to do my best for everyone.
I didn't know what else to do but share how I feel. It's probably not appropriate and is definitely a breach of mine and my wife's trust. We still love each other but we can't go on this way.
Thanks for listening x
Not going mad, and sorry to hear you are facing challenges that are putting a strain on your marriage, can she not just take a holdiday by herself if she needs a break? It sounds like she is having a very extreme reaction when all she really needs is a rest. Understandably when she had your son she probably didn't envision this is the life she would have, but we have to be prepared to love our kids no matter what. That is the responsibility placed on us by having them. You haven't said what your sons behaviours are, so presumably there was a time you noticed them develop and a time they escalated, the good news is behaviours can change, but accepting your son will always be autistic is the first step to understanding if new ones arise. It's not enough to help your son understand the way he is, although it is gret that you did and didn't hide it from him, can you either get him to see a child therapist who understands autistic children or would you benefit from trying to tailor neurodivergent self help therapies and see what your son could implement on his own level of understanding?There's a book: https://www.livedexperienceeducator.com/store/p/neurodivergent-friendly-workbook-of-dbt-skills That might provide a foundation for trying to help your son work through his issues, just bear in mind I am pretty sure this book is aimed at adult readers.
Thank you so much for your reply. My aim is to help improve all of our well being in the coming weeks - a holiday would certainly help her but her emotional state isn't conjusive of rationale at the moment which doesn't help- I feel like she wants to punish herself and won't allow herself the rest - which in turn has a huge domino affect on all of us. I think she blames herself for his prematurity (ridiculous as that sounds) and feels guilty.
My sons main behaviours / concers are:
Anxiety to the MAX - fretting constantly for hours on end despite reassurance. Typical daily tasks aren't easy
Not following basic instruction - a simple task can take an hour!
Hyperactivity
Refusal / inability to settle in bed at a reasonable hour
Waking up extremely early (exacerbating our frustrations and tiredness)
Temper tantrums
Fixation on certain topics / subjects.
He got worse around 2 years ago, but I feel like I notice a deterioration in certain things every day.
I've got to the point where we have so many appointments each week that I worked rather think how I / we can do our best to help him. My bond with him since his diagnosis is stronger than ever - I understand him now.
Sorry I had some last moment household bits to take care of so I hope this reply doesn't reach you too late. (If you spot any typos I apologise now, I also have ADHD and web browser Grammarly just decided to not load tonight for some reason.)About the tantrums in particular, while it's not like autistic kids can't have tantrums it's important to tell when they are actually meltdowns, because they can look alike but have fundamentally different causes and need to be treated differently. Here's a page from the NAS main site thathelps explainthem in a bit more detail. https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences
I would not necessarily worry about "Fixation on certain topics / subjects." that's likely just the monotropic thinking, and/or special interests. I'll also link a video that helps explain monotropism, but for now I'll just give advice if you want to expand his interests the way to do it is by introducing adjacent subjects, see what he latches onto and work your way out from there. From Lego producing franchise sets we expanded our son's interests slowly out to DC and Marvel comics and movies, from Starwars to outerspace and geology, and from Minecraft into other video games. If there are any taboo interests or elements you just have to be firm why they are not appropriate to share with other people, not an issue we had, but I heard it helps from others. Anyway here's that link to the mototropism video.https://www.youtube.com/watch?v=3mBbOOzhoGQ There are quite a few Autistic youtubers who evidently survived their childhoods and they can offer insight into other more specific autism related issues. The ones I think would servee you most immediately are the videos about Autistic inertia, sensory issues, burnout shutdowns and meltdowns, and communication issues, as they tackle the 3 most recognised areas of issues in most autistic people's lives.https://www.youtube.com/@Autistamatic https://www.youtube.com/@orionkelly https://www.youtube.com/@MomontheSpectrumhttps://www.youtube.com/@imautisticnowwhathttps://www.youtube.com/@autismexplainedhttps://www.youtube.com/@TheAspieWorldhttps://www.youtube.com/@PurpleElla
Thank you for all of this information - I'm putting together a folder with useful information that may help us, so i'll definitely include all of the above. My Son LOVES Youtube so I think it will be a really important resource for him in being able to understand his diagnosis - and for all of us to be able to help him during the more difficult days. Thank you!
Aw thank you :)