Please share your positive stories of a autistic and ADHD child later in their life.

@PercolatedFish this sounds not unlike my DC who is roughly the same age and diagnosed with PDA and ADHD. He started on adhd meds at age 6 and that is the only reason any of us are still remotely sane and functional. Now I have 6 or 7 hours a day where I’m not being climbed on and pinched and slapped and bitten. He does still talk and make stimming noises relentlessly, but most of the intrusive sensory seeking stuff calms down and he’s able to focus. He is a lot less anxious on adhd meds, and is increasingly willing to consider leaving the house 😬. He still needs constant undivided attention though.

It is so hard. Much sympathy and solidarity here.

You asked for positive stories: my SIL was apparently very like my DC as a child - PIL were looking into putting her in residential care at one point as home life was unmanageable with her violence and destruction. She grew up and became an accountant and is now happily married with 3 grown up children who are doing brilliantly.

Hi OP ,

I don't have much in the way of a positive story but I just wanted to let you know that there are others in the same difficult place :(

My son is 4 and has all the same issues you mentioned. I am constantly doing DIY and revamping things he breaks or makes dirty just so that we don't live in a mess. Think the likes of curtains pulled down, tie back brackets pulled of the wall, tv pulled off the wall, toiletries emptied into the toilet, springs in beds /sofas etc gone due to jumping, letter box ripped off. All windows needing to have window restrictors etc etc

His siblings can't really go anywhere or have play dates as his behaviour makes it very difficult. But my eldest is now old enough where she can attend clubs without me having to stay so that gives her some respite and normality.

I also worry how long before the neighbours have had enough of the screatching, the wall banging and the stomping as we are in a terraced property.

Does your son have any self injurious behaviour? My son's most recent thing is peeling his lips, pulling on his eyelids, pushing on how his nose, pulling his hair etc which makes me worry that he had some sort of pain?

Hi OP, I can't give any wise words about later life as my DS is just a year older than yours. Lots of similarities though, he has ASD, PDA, ADHD and ARFID. All I can say is that things do slowly seem to improve over time. For example, in the past few weeks DS8 will dress himself if I lay clothes out on his bed. There wasn't a discussion or demand to do this, it evolved naturally. We have a puppy who likes to jump up, so he doesn't want to go downstairs with no clothes on (he sleeps naked) and I'm often up dealing with his severly ASD non-verbal younger brother so not always available to dress him the moment he wakes up. So I started leaving clothes on the end of his bed once he was asleep and he now puts them on himself before he comes downstairs. I honestly never thought I would see the day!

I suspect I will still be dressing him on school mornings though as he hates school and does not want to go. He is at a specialist school but they have made so many changes this year he has really struggled. I am very u impressed with them tbh and DS begs to go to another school. Unfortunately it is an independent specialist school and I'm nit sure where else he could go. Not convinced he would like any school tbh and worry it could be out of the frying pan into the fire.

I really struggle to get people (particularly the children's disability social work team) to understand his complex needs. We did used to get respite but that has been withdrawn as they claim he does not meet their criteria, despite us having professional support and his collection of diagnoses. We just need to parent better apparently <hollow laugh>

I haven't got time to do a proper reply but yes to this! I had totally forgotten my son was prescribes iron as blood tests showed he was massively deficient.

My PDA autistic son is 12.5. He is pretty easy going now and easy to care for. He can recognise his own triggers and avoid them. As he matures he is so much better able to manage himself, and honestly at age 7 I couldn't imagine there was light at the end of the tunnel.
He moved to a specialist school during covid and it has changed all our lives not just his. Having staff and peer group who understand him, alongside a class of just 6, has been the making of him. I am frequently astounded by his independence and the confidence he now has.

I've been at breaking point. I left my career to focus on him and the EHCP battles, tribunal etc. I'd suggested we divorce so we could split the kids and he could have 1:1 parenting.

I have a career back. I've crept up from 1 day a week to 4 days a week working over the past few years and my son talks about when he goes away to college. He's come on phenomenally academically and isn't afraid to try anymore. The anxiety around failure totally stopped him learning in mainstream - it was a total barrier.

We're pretty much demand free/very low demand at home now, and it works for us. He's still mostly co-sleeping but we're definitely in a pick-your-battles mindset. At least this way we all get sleep.

Looking back, I struggle to even remember how hard it was, sometimes I think I imagined it. So yes, you will get past this. He will grow. And it's hard but worth it. The pride I felt yesterday as my son happily went to a birthday party for a friend from school - a total first - is huge. Little things for other kids become huge achievements and it is very rewarding.

You're knackered. You have a high needs child. You have a baby. Absolutely life is worth living and you'll get there. And where you are now is a stage. It's always a phase, and it always passes.

Just to say OP that I have a 7 year old autistic DS with PDA, ADHD, SPD and ARFID who sounds very like yours. Every day is a battle. I don’t have the answers, but kudos to you for hanging in there. Un-mumsnetty hugs.

On the support front - I joined several parent support groups which I found extremely helpful.

He sounds very similar to my DS as a child (ASD, ADHD, later got a PDA diagnosis).

I’ll be honest, his childhood was rough. Very disrupted education - three different primary schools (mainstream, then an autism provision within mainstream school). Two secondary schools (a specialist residential school, then a specialist sixth form). It was very, very tough on him and on our family. My mental health was very poor at one point, which is why we looked at a residential option out of sheer desperation. I was also worried about my younger child and the effect is behaviour and the chaos in our house was having on her.

He is 19 now, has been back at home since aged 16, and I’d say something shifted around 2 years ago. I think a combination of coming out of the other side of puberty, getting a much better understanding of himself and his needs & challenges, and starting to see adulthood ahead and wanting to have a ‘normal’ life.

He is much, much calmer and more rational. His PDA has calmed down since he started having more choice and agency in his own life, and his ADHD manifests totally differently - no more hyperactivity at all! He still struggles socially, doesn’t really have friends and is socially awkward - but I think a lot of that is down to his disrupted education as much as being ND.

He is growing into a lovely young man. I honestly thought he may end up in an institution or prison, but he is doing an apprenticeship that he applied for himself, and is getting himself ready, preparing his lunch every day and generally functioning like any other young adult. I hope some friends will come eventually.

There is hope. It can be a long road, though. In the meantime, think about what support you can get for yourself. It’s hard to understand the impact parenting a child with complex needs has on a mother. It’s relentless and you need to claw in any support you can for YOU.

Do you have any disability support groups in your area? We have one or two, and they organise activities like booking out an entire soft play centre for a couple of hours, just for the kids in the group. They also organise discounted trips to places — usually after hours so it’s less overwhelming for the kids. There’s even karate classes/a little football team! It takes all the pressure off knowing the parents attending these things have experienced the same things and there’s no NT kids in the group aside from siblings so no staring or whispering when someone has a meltdown. There’s also a really good Facebook group (UK Autism Spectrum Parents Support Group) where you can ask about these sort of resources in your area. It’s a big group, there’ll be someone on there from the same sort of area who knows what’s available.

@PercolatedFish I feel very similarly about the LA... and about to start a new battle with them and it is already causing me significant stress. Have you joined all the ASD/ADHD/PDA, home ed and EOTAS groups on Facebook? I have found a lot of support and practical information on how to go about challenging things there. The NAS also runs PDA groups and there is a Zoom group local to me that I know is very supportive and gives a chance to vent. I also go to a NAS coffee morning once a month with the same mothers (including the odd baby!) and find that is all a real help. You aren't alone. I know multiple families in a similar situation to you. Could you afford to get some help with the baby so at least you had some time to take stock and put some new plans in place? You can get 30 mins free with specialist SEN solicitors so that might be a start.

Give him an iron supplement. If you can get his iron levels checked with blood test but that could be a battle in itself. With my son, due to restricted diet his iron levels were on floor. This triggers fearfulness and anxiety. Giving him an daily iron supplement has made a massive change to his behaviour.

That sounds incredibly hard. We are about to trial meds (AuDHD) and our issues are nowhere near as challenging as yours... and I don't have a baby. I wouldn't hesitate to go down this path, although be aware it can be trial and error to get the right med/dose etc. It sounds like you need a lot more help than you are getting but I know it is absolutely exhausting trying to force the LA etc. to put it in place.

ds1 (ASC) was permanently excluded from primary & ended up in a special school. He is now in third year of a degree and doing well. ds2 (also ASC) could not cope with school and had an EOTAS arrangement as a teenager. He is also now at university. Things can improve vastly.

My son was very challenging and out of school ett at 7. Dont know the long term outcome but he isnt as challenging now. Melatonin helped him sleep and setraline helped with anxiety, occupational therapy has helped and lots of equine therapy.
He only has autism diagnosed but the OT and SaLt keep saying he should be screened for adhd too and they feel he has adhd as well.

It is a big deal agreeing to meds. I know adhd meds are different than sertraline but i think its worth remembering its not an irreversible decision. You can try them and if it doesnt help you can stop.

I have a 11 year old child who is autistic and has ADHD. He also has severe restricted eating disorder and huge sensory processing difficulties. Life can be very challenging with him but it's getting better in a lot of ways.

He has been medicated for ADHD since 6 and it's an absolute game changer for him and us. The medication only work so many hours a day but during those hours he is calmer, focuses well, had done really well academically in certain subjects (mainstream with enhanced provision support), built friendships and generally does well day to day. He now recognises how much he needs his ADHD medication to function.

He also takes melatonin to go to sleep and says his brain doesn't let him sleep without it. I was at the stage I had nothing left to loose so put him on them and I am so glad I did for his sake and ours.

The way I saw it was I wouldn't not give my asthmatic child his inhalers when he needs them so why deny my nuerodiverse child his ADHD medication when he clearly needs it to.

Firstly the council have a legal obligation to educate your son so I firmly suggest you seek legal advice from a free charity to force the council to find him a school. If your in Scotland I can recommend a charity that can help but am unsure about the rest of the UK unfortunately.

If you have to phone the disability team in social work on your knees and tell them you can't cope with him and need there help do it ( I have we got extra support). Lay it all on the line and tell me them where you are at.

Also start reading up on sensory processing difficulties as I suspect your child may have them. For example my son has noise sensory issues and hears things nobody else in the house can but hears noises much louder than they are, he can't cope with busy places so we don't take him, he has issues around smell so i watch what I cook to make sure it's not something that triggers him, he has touch issues so a hug can feel painful to him. We have visual wall charts up so he knows daily what we are doing, he eats his dinner (all his safe foods) in his room by himself as he cant cope with the chatter or sounds of eating around the dinner table of the rest of the family. We have to meet him where he is at and what he can cope with not where we would like him to be or where I would like him to be. Once you understand sensory processing difficulties you can put in lots of small daily things that help a lot even a change such as 5 minutes on thr trampoline and hour make a huge difference. Make sure you look up all 7 sensory systems as propriception and vistublar input are some of the most important things for autistic children.

If you are not already in receipt of DLA please apply. You are entitled to it.

I really feel for you as I know how hard it is and in my case it was so isolating. Family we trusted looked the other way and refused to help us whilst babysitting another family members child so they can drink and party constantly, people I thought were friends showed there true colours and life became very bleak but we are out it a lot of it. I have made new friends who are supportive. The family who looked the other way are now wanting to spend more time with us and our kids but we have kept them very firmly on the sidelines which is where they put themselves when we and ds needed them most!

Are you in contact with any other parents of kids with similar needs? There are Facebook groups and charities that can help.