Support thread for parents of young adults with autism

[Waterfaller]

Prompted by the Chat thread in which many of us are in the same boat! It can be a lonely/tough journey so here for solidarity and understanding.

I’ll pop back to introduce myself properly!

Thanks for setting this up. My youngest (21 year old ds) has asd, dyspraxia and now selective mutism. He managed in mainstream with 1-1 support and got 6 GCSEs but would never have managed A levels as he finds any kind of extended writing difficult. He’s now at a mainstream college with group support and will be starting a level 3 qualification in September. All sounds ok but his default would be to be on his iPad all day in his room. He finds any kind of social interaction, even with family coming round, extremely anxiety provoking and can’t travel on his own. Still has to be supervised in shower and told things like brushing his teeth, clothes need washed etc. I don’t know where he will be long term and that is a worry and Im grateful for this thread so we can share ideas and things we have found that work.

Hi @Fraudornot . My DS is 19 and went to mainstream school and sixth form, he’s very bright but hit a wall after GCSEs and struggled to engage with A Levels, scraped passes but only just. He’s working now but hates every minute of it and the masking effort sucks all the energy out of him. He is very negative about any kind of work and has no social life. I flip between optimism that he will mature over time and despair that we’ll be in the same position in 5 years!

Thanks for setting up this thread.

I have two sons with autism with very different profiles (but interestingly receive the same level of PIP).

DS1 has severe anxiety he was selectively mute and diagnosed with Tourette’s/tic disorder at primary. He failed secondary transition and after tribunal only lasted 5 terms at specialist school. He has been at home ever since but after involvement from SOS!SEN got 5 GCSEs with tutors provided through EHCP plus SALT and OT plus weekly visits from youth mental health workers. Both OT and mental health staff took him out and about to shops, cafes etc to improve social skills. It all ended with Covid lockdown and he refused to engage from then on.

He is now 25. He can’t cook a simple meal (can reheat prepared food in the microwave) or do his laundry although he will put it in the basket and will do things like mow the lawn if asked (only at the back of the house when the neighbours are not in their garden) and does a good and thorough job.

His mental health has improved hugely - he is no longer suicidal - but social anxiety means he only leaves the house in my company to visit the secure dog field. He won’t talk to anyone but me and his brother and will hide in his locked room if tradies visit etc.

I was separated from my now ex but we took out a JBSP mortgage with our son as sole proprietor. (Whole different stressor as ex doesn’t want to continue paying the mortgage!) Me and both my sons live in the house.

DS2 has autism and ADHD (medicated). He has genius level IQ. He received a bespoke package via his EHCP for internet school plus subjects such as English and history at GCSE. He ended up with 11 GCSEs and went to a brick 6th form where he got maths, physics and further maths A levels (2 A stars and 1 A) and is now at the local uni doing MEng and gets DSA.

Transition to uni has been difficult but he now has a partner with a wide network of friends so he stays over at their house and he cooks hello fresh recipes for my son - this has worked wonders for his socialisation and previously extremely restricted diet.

I worry about his work future. Whilst he gets a first with no or little revision for maths he struggles with the engineering aspect of writing reports and making oral representations etc and just scraped a third. So he thinks he won’t get the required grade for the MEng and is not sure he wants to be an engineer but doesn’t know what he’d want to do instead.

He has never worked or volunteered. He’ll do some stuff around the house if asked (mutiple times) but always does a half assed job (tbh I wouldn’t employ him!).

Beyond living forever I have no plan for DS1 long term and just hope that DS2 does not fall into unemployment when his degree ends.

Been there, done that etc so am just really looking for similar stories so I don’t feel such a failure and alone.

Thankyou for this thread ,much appreciated,I was on the one referenced ,but under a different username x

Thanks so much for setting this up.

Thanks for the thread, will be back later to introduce myself properly.

My DS sounds very similar to yours @Fraudornot, just a few years younger. I think he would love to have some friends, but his social and communication skills are so poor that it is just not possible. Cannot do extended writing at all, and so is likely to fail GCSE English (even with extra tuition etc). Reluctant to go out by himself, can't get a bus etc independently, spends most of his free time at home. I'm working on developing his life skills at the mo, but I struggle to see a positive future for him.

Thank you very much for doing this 🙂

Has anyone’s DC been diagnosed as an older teen? Or did you get their diagnosis much younger.

Not what you asked
But I got diagnosed recently at age 50 with autism,and age 53 with ADHD,if your wanting to know about aessment of over 18s
But my DC were diagnosed at age 3 and age 7

My youngest is currently sitting his GCSEs at home
We have an EOATS package and he had lessons at home
But it's been really stressful organising it ,and coping with the people in the house

My daughter was formally diagnosed at 17 but I was told by her nursery at 2 that she was probably autistic. Thankfully the school she went to always treated her needs without a formal diagnosis. It was only when she was Uni age they said to get her properly diagnosed.

I'm feeling a huge mix of emotions I don't know how to process today .
Another of my adult DC has had an offer accepted on a house he is buying.
So my second DC to buy their own home
Which is absolutely wonderful and I'm so happy for them
But feeling sad for my DC ( autistic)who is actually older than this DC,and has never had a job and hardly ever leaves the house .
I feel some how I have to try to make things equal, obviously I can't .
I feel shit as I have a diagnosis of autism and I obviously gave it him ,and he is much higher support needs than me .
I really need a good cry ,and life feels so unfair right now

@Blueflutterby that’s really a lot and no wonder you’re feeling all the emotions. DS also has neurotypical siblings and I really get that the milestones are bittersweet. I’m sure you’re a wonderful parent to them both with all their differing needs 💐

Checking in to say hi, thank you for setting this up @Waterfaller. I have DS 17, who missed a lot of school in GCSE years and is clinging to 2 A levels.

@Blueflutterby congratulations to your younger DC. I know it's complicated but I do think your older one seeing their siblings doing these things might help a bit too, make them seem more achievable.