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

[PercolatedFish]

I am on my knees with my 7 year old DS. He's autistic and has ADHD. I think the combination may be what makes him so challenging to parent.

He has no school as mainstream couldn't cope and no suitable specialist school available yet. Most support workers that are sent as part of his EOTIS package say they can't cope and abandon him after a session or two.

Paediatrician has offered to trial medication for ADHD but has said she isn't convinced it'll help as a lot of his behaviours could be because he is autistic and not the ADHD causing it. She has also warned of the side effects which tends to put me off as he's so young still.

I am feeling absolutely destroyed by it all. Its become too much for me. I have a 7 week old baby who I can't enjoy spending any time with as apart from meeting her basic needs I have barely any time for her as DS needs so much time and attention and as he's no longer in school there is no respite.

I am majorly depressed. Just hoping to hear stories from other families who went through a hellish time but actually came out the other side in a more positive place.

Right now everything feels hopeless and not worth living for.

Firstly, life is worth living, this is a bad patch which youll get through. I also had a baby when my son with ASD/ADHD was 7. It was the hardest time behaviour and challenge wise. He's 18 now.
He started special school at 7 (from a mainstream) and that made a big difference to him and us.
I home educate my younger ones, so can also see the benefit in that. If you are home educating have you connected with other parents locally? That will make a big difference to you, as there are many in the same boat, unable to get a special school placement.
Also look at your local offer. Is there a Banardos scheme that will take him for days out etc? Do you have a social worker assigned to him that could help? Lots of young people with SEN do, as it helps access lots of services. You need some support.
At 18, we still have struggles. But he has a great life, goes to a special college, he's part of a lovely community and has friends. Everybody who knows him, loves him. Things got a lot better from age 7 and that was mostly him starting special school, so I'd keep pushing for that.
Things will get better.

Could you let us know what are the most challenging of his behaviours?

My son who is 12 has autism and adhd.

He's just started medication and tbh I wish we started it much sooner.

I also was wary and was warned that they might not do much or the side effects are this and that.

It got to a point where we had nothing to lose and we said we'd give them a go. If they didn't work or he didn't like them we'd stop.

He is at a private school and was on the brink of getting expelled. So we were desperate.

Ahh, OP, big hugs to you.
I know little of autism but neighbours a few doors down have a little girl who has autism.
One day she was having such a loud meltdown indoors that a nice fella who always walks his dog along the way and chats to everyone felt he had to knock and ask if everything was ok.
The parents realised they needed help then, and as a result, the little girl goes to a specialist boarding school during the week and has had care workers take her out an about during the day leading up to this.
Try the autism organisation websites? They must have specialist knowledge of how you can get help like this.

I'm so sorry you feel so low OP. My DS is only a year older but we took the decision to medicate him this year, although it's his 'autistic' side which causes the most issues. It hasn't stopped the rigidity or the meltdowns entirely but it's made a huge difference to his ability to cope - I like to think it means he can mentally take a breath sometimes and get a little perspective before a reaction kicks in.

He also says he likes how his brain feels on the medication to the point where we'd only planned to give it for school but now give it every day.

I'm worried for his future, especially the teen years which are looming nearer, but he is definitely improving with age. Sending strength to you!

@Fionaville

That helps to hear the reaffirmation that it's just a bad patch but it just feels so hopeless and never ending at the moment. I know I feel like this as I'm sinking really far into depression so can't find any hope in anything but it just feels helpless.

I'm so glad to hear that things improved for your son. My son is so desperate for friends but has none as has never been allowed to attend a school to be able to make any. This also means he's never been able to develop the appropriate social skills so when we go out to parks etc he cannot appropriately interact with the other children so either puts them off and they run away or they start to pick on him.

So far any kind of outreach or support workers that have been set up for him have all come for a few days then said they can't cope with him due to xyz and then stop the sessions.

One of my brothers was diagnosed with conduct disorder as a child that was so severe, a psychiatrist told my mum that he would be dead or in prison by 18. This was when he was 7. He’s now 31, he’s been with his partner since they were 16, they have two gorgeous little girls together and own their own house. They have a lovely life and he’s miles away from the kid he was all those years ago.

Another brother is autistic and after struggling badly at school, he’s now working as a gardener at 20. He has his own car, enjoys his job, has good friends and is cracking on brilliantly.

My youngest is AuDHD. He had a rocky start to education and although his mainstream school limped along and really tried their best, he was unable to confidently read or do much more than count by the time he started Year 4. He then moved to a specialist school where it’s become apparent he’s exceptionally bright and his teachers are talking about “when” he does his GCSEs/A Levels/goes to uni. His previous school talked very vaguely about his future and in terms of group homes at 18 etc so this is such a relief for his dad and I.

I’m also autistic. I’m educated to postgraduate level and have an amazing professional job that I adore. I’m married, I have two children, and whilst I do struggle with my mental health at times, I’m pretty happy with my lot.

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.

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.

@sleepymouses

The main challenges are everything being a battle with DS. His paediatrician has said he has PDA tendencies so I have researched that and tried my best to remove as many demands as I can to help him but he resists literally everything.

He also has anxiety and fear of being alone so wants someone with him 24/7. He is very demanding and can't do much for himself and if you try to push him to do anything for himself the demand avoidance starts and it causes a big meltdown. So for example, I still have to feed him as he can't/won't use a knife and fork, he has AFRID so only eats a very restricted diet. He cannot get any of the foods for himself from the cupboard, can't get his own drink/fill a cup. Can't dress himself, needs help with toileting, teeth brushing etc. So in many ways it's like having a.baby still.

He doesn't understand waiting, he wants everything instantly and if it's not instant he will harass you over and over until you get/do whatever it is.

He is incredibly hyperactive, has broken most of the furniture in our home by throwing himself into it or jumping on it. Our sofa is broken, mattresses all broken, sinks broken, table and chairs broken. I have replaced them for them to all be broken again and can no longer afford to replace anything.

Occupational Therapy have said this is proprioception and he does it to feel where his body is/enjoys the sensation. I have tried giving him things like weighed blankets/lap pads, sensory toys, a space of his own to throw himself around in etc but none of it works and he goes right back to using the furniture and breaking it.

He is very impulsive and if we are out he will run off, won't listen, gets fixated on something and goes deaf to anything you are saying so this can be dangerous by roads or in busy places.

He wants friends so badly that he makes a beeline for other children when we are out but it always ends badly and sometimes results in parents being angry at me and chastising me so I am very on edge whenever we go out as I expect negative experiences all the time.

He doesn't sleep well. In and out of bed all night. Cannot control how loud he talks / walks so is always shouting and stomping around and wakes the baby constantly.

Is very tactile and is always climbing all over me, squeezing me etc which I have become very sensitive to and now find it like torture.

There are many other things too but it's too long to list

@NotSayingImBatman Thank you so much for sharing this. It gives me hope at least. I just need to find ways of getting through this hard patch.

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.

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.

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.

@Grimbelina I think the LA are part of the reason I'm so depressed. I feel so completely defeated by them. I've spent years fighting them trying to get what's right for my son and I have gotten nowhere. I've submitted formal complaints and gotten nowhere. I've contacted my MP and gotten nowhere. The only thing left to try is getting legal advice but unless it's free I cannot afford this.

I can't get any support as there is nothing left to try. None of the support work companies have worked out. No specialist schools available at his age yet and the ones that are available all reject him and say they can't meet his needs. I'm not home schooling as I have nothing left in me to do that so he is getting 0 education.

I have tried meeting other parents but can't find anyone in a situation similar to mine. Most people say "oh i know how you feel, my child is like that, let's meet up" and when we meet up it turns out their child is nowhere near like mine and they are all horrified by my DS's behaviour and never offer to meet us again. I can't put DS through the rejection any more and I can't go through it either.

@DNLove He had a blood test a couple of years ago and was low in iron but then his paediatrician went off sick for a year and no one would help us so finally about 8 months ago he got an iron supplement which he has taken and finished but paediatrician will not test him again to see if he is still low or not because she says the stress of the blood test isn't worth it! But his diet hasn't gotten any better so surely he will just become low in iron again.

Everything is a battle all the time, fighting the system and fighting my DS. I'm exhausted.

@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.

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.

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.

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

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.

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.

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>

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?

@Grimbelina I have joined a lot of groups on Facebook and I do read the posts often but I am reluctant to go to any of the meet ups as after 7 years of negative experiences with people and children I am riddled with anxiety over it and can't relax or enjoy company. My son instantly dysregulates when in other company as he finds anything more than a one to one overwhelming and he goes like the tasmanian devil so it becomes exhausting to be in the company of others no matter how understanding they are. I will definitely look into finding some 30 minutes free legal advice as I think this may be my only other option regarding the LA. Thanks for taking the time to reply. X

@OutYerEd Thank you for this. It's great to read that things can and do improve even when they seem hopeless. I'm happy for your DS as well.