Parents of ASD young people…does it get better & how do you cope…?

[Wintertonnn]

My DD is a young adult and has ADHD and ASD. She was only diagnosed two years ago so we’ve spent years trying to work out just why she was struggling.

School was hopeless and it’s only now since her diagnosis that I realise what masking actually is. Whole new learning curve for me.

Shes not working but is doing a part time course. When not doing that shes always in her bedroom, only comes out to eat then back in. We can’t see her working as such, because her anxiety can be too high. I worry about her so much but at least she goes out once a week.

Please any words of wisdom, anything looking back you’ve learnt or advice you can offer?

thanks

No words of wisdom, came across your post looking for help with my DS. He is about to leave school and I worry about similar.

Sorry to hear about your son. It is a worry I know.

My DD the same. Not working, but volunteering a little. Struggling with her mental health with some NHS support but it’s so slow. I wonder if anything will ever improve.

@Willow Sorry to hear about your daughter. Can I ask how old she is?
I’m pleased to hear she does a little volunteering. Yes receiving support is so slow, I can relate to that.

I can relate to this. My DD sounds similar. I struggle with the feelings I have over the lack of support she got throughout school and it’s now we’re paying the price. I worry about her future.

@Wintertonnn Just to say I have an autistic son and daughter 19 and 15, both recently diagnosed and suffered greatly with the uncertainty in lockdowns, both had a very tough 2 years with depression and anxiety. We went private (not always possible I understand) because of the waiting lists, both went on medication and both had some counselling. We hadn't realised the impact of the previous trauma of school due to the autism and the counselling helped them come to terms with that and understand themselves better. We've spent a lot of time with them talking and understanding how they have perceived the world, and as a result we're even closer. They know we'll support them 100% which I think has given them to confidence to go out of their comfort zone. My husband insisting our daughter start eating with us again so we spend that time together. in addition I've read so many books to try to understand where they are coming from. However I think the key has been finding something they love. My son's aim was to go to university and while the first term was quite tricky he is now thriving. He has so much more energy now that he isn't so anxious. After a year off school my daughter has now joined a new much smaller school (only 2 weeks in) because she was desperate to get back to a life she recognised and the structure of school. Hopefully once it is familiar to her and she gets to socialise her anxiety will reduce and it will be easier. I don't know if this is any help but I look back over the last two years where we've had some awful times and am so relieved they are both now finding their way (with a few hiccups but definitely going in the right direction).

This is encouraging to hear and hope the OP takes comfort from this. I am in similar position with DD15 (Year 10) and you mention counselling helped - what form of counselling was that? was it with a counseller/psychotherapist/psychiatrist or other specialist and how did you find the right counselling?

@BedfordGardener
I'm going to be honest that I think it can be difficult to find the right counsellor so choose carefully. My son was fortunate with the psychologist who diagnosed him as it was a good fit, and he knew what traumas he wanted to discuss. With my daughter we stayed with the practice who diagnosed her, and at first went through special CBT counselling for autism but stopped after two sessions as it clearly wasn't going to work (also it was on Zoom which didn't help). We tried again with the same practice with a different counsellor and we thought she was helping. However several months in with no progress, we had a frank discussion and it was obvious she seemed to have misunderstood a lot of things about the situation so we stopped using her. She was very begrudging about meeting with me as the parent when I thought we ought to be working together. With an autistic daughter who misunderstands situations surely a therapist needs to get two sides? I then went to the BACP website and put in relevant search items (ie understanding of autism) and found a few local therapists (no longer psychologists and therefore a lot cheaper!). My daughter and I narrowed it down to two and we met both of them and 'interviewed' them. This time I made it clear they needed to communicate better with me as the parent. They were much more receptive and my daughter chose the one she felt she could talk with more easily. However her autism meant she didn't find it easy to tell the therapist what the main issues were to start off with so we discussed it beforehand then we went in together to come up with an agenda for the therapist and then they met alone. Fortunately two weeks ago the therapist signed her off. Good luck - I hope you find the right one.

I’m also unsure where to get help for my DS. He’s 22, dropped out of university, has been suffering from depression and doesn’t seem very capable of finding a job, I don’t know if I should get him to ‘sign on’ if they will give him help and support into work or if they will just force him to take any job?
we’ve been supporting him as much as we can but I feel like I’m not getting very far, he did see a CBT councillor for a while, but she said although he engaged in the sessions he didn’t do anything out of session so wasn’t making any progress.
he just seems stuck, and spend a lot of time in his room and gaming (which I know is a problem). He’s a bright boy, he did well at GCSE/A levels but didn’t cope very well at university.

@Itscoldouthere I assume if you are on this thread that your son is autistic? My son had a breakdown when he was 16 and not capable of much at all, although he did manage to get through his A Levels but obviously due to the pandemic he was at home most of the time (and they were subjects he loved). I would honestly try and find a counsellor through BACP. What he is going through is probably so complex some expert help is advisable.
Perhaps he just didn't cope at uni because he needed more support there and doesn't perhaps even understand what help he needs. Thanks to the support staff at uni, my son has realised he also has ADHD and the staff there have been really supportive. I agree its best not to push your son into a job as the moment, probably more useful to spend this time working out what went wrong at uni and what help he needs. ie was it the social side, noise and bustle, organising his time, difficulty concentrating, not knowing what he was supposed to be doing?
If he is depressed and now an adult it is worth seeing the GP. My son went on sertraline and it helped him enormously. It was enough to give him the confidence to start getting out and about again when that was difficult.

Mine has ADHD ,ASC, learning disabilities plus a host of other issues. Between age of 11-16 he never left house and hardly ate . Tried different regimes of meds for known conditions and never crossed my mind until saw a specialist consultant in London he had depression. Changed parenting strategies ( again) , different meds and a really supportive carer he slowly put on weight and started venturing out. Fast forward to 30 years of age .he will never be independent but he can do local known journeys by himself .he does his interests with carer .she supports him with shopping ,cleaning his room ,cooking one a meal a week. She also takes him to all his appointments.she is a god send.

I can leave him for about 4 hours as long as I or his carer are end of phone .so although some might not think it's an improvement for me I have a life again and happy with how things are.

@VMJ1 thanks for the reply, yes he was DX with ASD/Aspergers aged 5. He had lots of support through primary school, he made such good progress and moved to a very appropriate secondary school and coped very well with little support and achieved very good GCSE results, he moved for 6th form and didn’t do quite as well, but we thought he was ready for university.
He had a DSA assessment before going to uni and was meant to have a mentor, but the system isn’t joined up and he had to arrange the support himself and as he didn’t interact well with student services he didn’t get the help. He was on a course with lots of students (300 a year) and he just got lost/was invisible, started to struggle didn’t ask for help, then started to get behind, then he stopped going to lectures and just lost all engagement with his course, not helped by Covid.
He was DX with depression by the uni doctor and has been on meds for 18 months.
He’s just seen a doctor today and they upped his meds and gave him links to self refer to mental health.
what is BACP?

@Itscoldouthere I can see why he gave up with uni, my son gave up after a week and we had to collect him for the weekend to sort things out. We had to remind him that the only thing that kept him going through his A Levels was the thought of going to Uni. Fortunately he managed to get in touch with someone at the college (a pastoral director) who sorted out a meeting with a mental health nurse who was a godsend! Sadly during Freshers week he didn't know who to get in touch with for support. He had a telephone interview set up with the disability department for about four weeks after he started (way too late)! My son also got given a mentor and this has been of some help, but I agree they expect too much of autistic students to get this sorted themselves. It must have been awful being there during Covid as well. Asking for help is impossible for them especially if you haven't built up face to face contacts. Fortunately my son was only based an hour away so for the first term we collected him every weekend. He only started going to lectures in his third term as they were no longer being screened via Zoom. Is there anywhere more local your son could try for in the future with a better support system in place? My son really recovered once he started to gain some confidence at college because it gave him something to focus on that he was good at and he started to get to know people and even go to some clubs (interest clubs not night clubs!). I'm glad your son's meds have been upped, that made a big difference to my daughter who has also suffered depression after her diagnosis. BACP is the British Association of Counselling & Psychotherapy, and it lists counsellors in your local area with their areas of specialism which I why I focused on the ones who included autism.

@Trainham Glad to hear your son is coping and that you get some freedom. At the moment my daughter doesn't move far without me so I can appreciate how wonderful four hours is!