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.

I have an autistic DD now 22. Second of 4 children. Wasn’t diagnosed until she was 14 but by then couldn’t manage school & had a huge breakdown. Exceptionally bright, no education, no social life, anxiety prevents her from doing anything, she’s very paranoid about being autistic. Mental health wise she’s no longer suicidal & has had some very difficult times. Siblings are all absolutely flying which makes her feel worse, I have tried absolutely everything, it’s heartbreaking but I know there are young people far worse off.

Yes it's Vera hard I have 4 as well ,and in the same boat

Hi, apologies for not having posted properly until now and my deepest sympathies to those in the same boat.

DD (was DS) has ASD and treatment resistant depression. Previous attempt with private psychiatrist has failed. She is 22 and hasn’t been able to do anything since coming back from university after 2 weeks. Eating is now an issue.

Over the past 6 months or so she has had more insight into her symptoms. She starts feeling strange when depression starts. Once it came on in the space of 6 hours, lasted about 3 weeks then woke up one morning and in her words felt normal. I feel there is something going on and no one has joined up the dots as yet, she now agrees.

She has had counselling for 3.5 years but finds that any strategies put in place work for several days but then don’t. She feels that she needs to go back to the psychiatrist but he basically said he couldn’t help so having discussed it we feel we need to find a different one who specialises in treatment resistant depression and autism . I don’t suppose anyone happens to know anyone by any chance ?! Thanks.

It really worries me the talk of cracking down on benefits,for when I'm dead .I'm worry myself sick he will end up homeless.he can talk a good talk ,but can't follow through with action .you wouldn't know he was disabled by talking to him ..or maybe you would.
Will it be enough he is known to social services and there is a package of care available to him ,when he chooses to accept it .
There is no family he can live with when I'm dead
Sometimes I think I'm wrong keeping him at home now
I feel I should get him settled independently
But he doesn't want that ,my DH doesn't want that
But I think it's better to get him sorted out now ,than to hope the opportunity for help is still there in 20/30years time
It's so so difficult

My DD was diagnosed autistic at age 14 in 2023 and with ADHD the year after. I’m 59 and was diagnosed with ADHD 7 months ago.

@Blueflutterby I hear you. I feel however that a lot can change in the space of say 10 years and I am trying to be as philosophical as is possible in the situation. I have another DD but it isn’t fair to expect her to step up and I have told her it is my issue to sort.
@Waterfaller DD was 19 or 20 when diagnosed with ASD.

I got diagnosed with autism 4 years ago and ADHD this Easter just gone

I've the same ,I feel it's not fair for others to step up
But mine wouldn't do .they don't have a great relationship

I think for now @Blueflutterby all we can do is focus on any minute wins and try to build on them. I don’t let myself go there mentally generally as it just stresses me out.

Yeah I agree ..but my adult DD keeps bringing it up ,I assume to make sure I completely understand she is doing nothing to help .
I don't expect her to ..never have expected anything from her ever .