New here

Hi there,

I hope you are all doing ok today. I'm new here. I have been aware of the NAS for years because my eldest brother (18 years my senior) is in 24-hour care with autism and many other needs but here I now am, somewhat unexpectedly, for our child. We have a 15-year old son who is currently in burnout. I read some of the other posts here and it did bring tears to my eyes to see that others are in a similar or worse boat and are naturally feeling so worried. We had it confirmed just before Christmas that our son has been experiencing many of the traits or signs of ASD all his life, but has been masking and unaware of why he felt different etc. A lot of the recent changes at first we thought were exam and teenage stresses.

To backtrack a bit, he stopped talking to us about 5 months ago, which turns out was because of the burnout over efforts outside the home and because he feels safe at home to stop talking. I know that is the opposite of what many people experience. We tried the GP (disaster) and were so scared at this change, imagining all sorts. In the end I got a private counsellor/therapist who as it happens specialises in young people and in autism, and who has been fantastic. From the initial chat with us and hearing what we were saying, they recommended we be open to the possibility of ASD, especially given family history. It looks like they were right, and many things make more sense now.

We are all trying to come to terms with the new knowledge and how our son has been masking and we had no idea, and how he must have been under so much stress and exhaustion but without any really obvious signs until now. We await a private assessment, with initial phone call this month. He's due to take his GCSEs in about 11 weeks but at this point we are backing away from all that, which is incredibly hard and scary. He has always been academically able and bright, so there are a lot of mixed feelings both in him and in us, and fear about trusting it all to work out.

We could see over the last few months that our son was suddenly and increasingly really struggling with school, like others have said, and the last straw was him retreating to his darkened room and literally collapsing face-down in tears on the bed after school. He has now been off school for the last 3 weeks and is somewhat better from being away from it. About the second day away from school he started communicating with me via WhatsApp for the first time in months. We have no intention of making him go back as it really isn't the right place for him right now.

However following parents eve last week (without son), we need to get a note from the GP and have a home visit from school next week (safeguarding). That in itself is a source of stress as I'm not so sure of how the GP will be, and the last visit (albeit to a different GP surgery) was so stressful for all. My husband is internalising it a lot and is not engaging directly too much with our son because he is afraid of getting things wrong. I know I'm getting things wrong sometimes but one of the first things I did was write our son a letter to say we aren't experts and perfect parents and we won't get it right all the time but we promise to keep trying to support. It does feel lonely and at the moment I am feeling overwhelmed doing all the work of finding help and information, reading the books etc., and arranging everything to do with his support, therapy, appointments and assessment. We both work full time, and my husband's job is stupidly busy. Mine gets insane over the summer and early autumn months. I single-handedly run a smallish business, doing all the lab work and admin, so I get no breaks and we can't afford to hire anyone else. We both also run a sports class for 3 hours a week after work.

I guess we are all feeling overwhelmed at the moment. 

I feel like a switch has flicked and we are suddenly faced with two different versions of our child.

Sorry this is a long and disjointed first message, and thanks if you took the time to read.

Parents
  • I am so sorry that things are so bad for your son, and you and your husband. You seem to be a marvellous mother and I am in awe at how much you are doing. Is it possible for you to step back from the sports class for a bit, or step back from something else? I am in a very different situation  to you, being in my own, so I have no experience of anything you or your son is going through, other than being a late diagnosed autistic woman. I hope that you can get some support and that things will look soon look more hopeful.

Reply
  • I am so sorry that things are so bad for your son, and you and your husband. You seem to be a marvellous mother and I am in awe at how much you are doing. Is it possible for you to step back from the sports class for a bit, or step back from something else? I am in a very different situation  to you, being in my own, so I have no experience of anything you or your son is going through, other than being a late diagnosed autistic woman. I hope that you can get some support and that things will look soon look more hopeful.

Children
  • Hi  Wow, thank you so much for your kindness. I am glad you have your diagnosis. I hope it helps you. Hearing from other people with autism is so helpful to help us better understand. My husband and father-in-law are now reevaluating their own experiences and some things make sense for them in light of this. Our son expressed that he wants to find out about a diagnosis for himself to be able to understand himself a bit more. He is an amazing boy, and all the teachers were saying how lovely he was, if quiet. I do wish we could take a step back on something. As for the sports, it is a club that we run and we love the kids that train with us, one or two in particular have their own needs and life journeys and we wouldn't want to let them down. It's not something you can take on unless you have a certain level in the sport. We only stepped in to stop the club from closing in the first place, otherwise we had already said we couldn't do it. We are part of a larger organisation and train in the sport ourselves, so it's a bit difficult. Am waffling a bit!