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.

@NCfor24 Thanks for sharing. I have to keep saying to myself that it'll pass. You're right, I am exhausted and overwhelmed and that affects how I see everything and cope with everything which admittedly isn't very well at the moment.

@Vinvertebrate Thank you

@susansaucepan I'm really sorry things are so tough for you as well. Our situations sound very similar so I can understand. I really hope things improve for us both and that we reach the light and the end of the tunnel. To answer your question yes my son does do self harming behaviours when he dysregualtes. He hits and punches himself in the face and also headbutts walls and the floor. It's very difficult to see as of course I don't want him to injure himself but it's been explained to me that it might be a self regulating thing as the pain distracts him from whatever else it is he's feeling that he is struggling with that's causing him to dysregulate.

@LettersOfTheAlphabet I know what you mean about out of the frying pan and into the fire. I also feel like specialist school won't be the answer to our problems as from what I've seen of what the schools have to offer, I'm not impressed. The specialist school that my son is on role with but has never attended failed to tell us that every single child in their cohort is non verbal and has significant learning disabilities. My son is very verbal and sociable so when he went for his two week transition he absolutely hated it as couldn't understand why no one would talk to him. They also failed to mention that they had held him back a year. This is the only school available to him at the moment but the others that will be available from next academic year seem equally as bad.
DS tends to imitate any behaviours he sees so I am very reluctant to put him into an environment that's filled with extreme behaviours as I'm afraid it'll make him even worse when he's at home and that the negatives will outweigh the positives.

I also had a similar experience with disability social workers. They discharged us as said we didn't meet their criteria and couldn't really understand the problems we were having. In fact that's been the case with most services we've been put in touch with. It's why you end up feeling so alone, as no one will help.

@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.

@Bunnyhair That's so good to hear. I need the positive stories to give me the will to keep going.

Also after hearing a few PPs mention the success they've had with the medication I am considering trialing it. I always said I would leave it until things became really desperate but now that the baby is here it's rapidly approaching the really desperate stage.

DS really loves his baby sister and has had some really beautiful moments with her which is a positive to hold on to, but the disruption and change is massive for him and the impact is immense. I'm trying my hardest to be patient and manage it as best I can but the sleep deprivation and exhaustion that come with the demands of a baby on top of daily life with DS are just too much for me.

I only have my partner who is at work most of the time and one other family member to help me. Said family member is 100% against medication for ADHD and has expressed that they will withdraw all help they give if I went down that route so that is another big stress for me.

That is really tough re: the relative who will withdraw helping you choose to try medication. What is their issue with it?

Re: schools - is there any possibility of scraping together funds for an independent school? Something like a Montessori or a Steiner school? We were facing ‘school refusal’ when our DC was at pre-school, and were fortunate enough that a relative offered to help us pay for a small unassuming private school locally with a reputation for doing really well with bright ND kids. It’s been fantastic for us. And it’s not as expensive as other independent schools because it doesn’t have all the bells and whistles - sport, fancy premises etc. It’s been a lifesaver.

@Bunnyhair I don't really know what their reasoning it apart from that they think it'll be damaging for DS health wise and that it'll "mess them up" ... I've tried explaining that if it did have negative effects then of course i would stop the medication but they seem to view it as something that is addictive and that wouldn't be able to be stopped. It's really difficult as I rely on the help they give so much as its really all I have. It's so unfair as i shouldn't be put in a position like this where I can't even make the choices I want regarding my own child but I don't know how I would cope at all without their help as its the only way I can attend appointments or get any time alone with baby.

@PercolatedFish, I just thought of you and thought to see how your day has been ?

I hope things are getting better for you.

I forgot to ask if your child is verbal ?

I taught in a SEN school until I retire after covid . One particularly r student I taught with autism fixated on airport and now works at Manchester A irport checking luggage another loved Buses and now helps to travel train other young adults. Obviously they were high functioning but they have done really well using their traits as a positive. In mainstream education I'm sure lots of very successful scientists have autistic traits which help them to really focus. It's only recently that these terms have been used.

You really can't be controlled by another person saying they will withdraw support if you medicate - this doesn't allow you to make the best decisions for your children. Can you afford some paid help instead? Even if only for an hour or two? Also the groups I mentioned were for support for you, not to take your son to.

My brother not my child.
Autism and pda, non verbal, learning disability
Now works part time, drives and has a partner.

Thanks for starting this post. I too have children with special needs and my oldest is particularly challenging, with complex needs. Also waiting for specialist provision and endless battles with EHCPs and LA. I understand your feelings and the desperation - message me if you would like to chat. It’s good to read positive outcomes though!

My nephew has ADHD, ASD and brain damage and some signs of Tourette's. He is a wonderful, calm, sweet and funny 23 year old man who has a lovely life with my DSis and DBiL. The school years were a hellscape at times. There is light at the end of the tunnel x

Ds1 (ASD) had a “bad patch” that lasted 2-8 basically. But is now the most delightful 17 year old you would ever care to meet. Appling for university is excited about his future and opportunities.

DS2 (ADHD). Has bad waves but is bonkers and brilliant. He is getting much better and recognising what he is and isn’t capable of. And then putting plans in place to help him do the stuff he finds hard. He’s 14 and at current rate of progress is probably going to be a functioning independent adult (if loopy).

Primary education: they went to a small private school (which wasn’t brilliant for them but did the job). Had this not been an option I would have home educated.

I gave up meeting people on mass or groups very early on as it wasn’t good for me or the boys. We’d all come away in tears.

I’ve read lots and lots of books, articles and blogs and done a ton of training.

@susansaucepan It's not been so great the last few days. I'm tired and the challenging behaviour is really getting me down plus baby is colicky as has silent reflux so it's particularly difficult at the minute. DS is very verbal. He was speech delayed and didn't start speaking until nearly 3 years old but now he speaks all the time, non stop in fact!

@Grimbelina I know, it's really unfair but puts me in a predicament as with that help withdrawn I don't know how I will function at all. Its wrong to be put in a position like this but unfortunately that comes with having controlling and not so supportive family members.
I can't afford any paid help at all. Barely scraping by financially as it is due to not being able to work as I am DS's registered carer. We do receive DLA which obviously helps but since having to give up my part time job finances have become very tight.
I wouldn't be able to attend any groups just me as I have no one to look after DS. I will continue to read the Facebook groups though and this thread has helped a little as it's good to hear positive stories.

OP contact SENDiass, they are in every local area and are a charity specifically to support children and carers with SEND. They know the law inside out and can advocate for you and your child.
IME, adhd meds help. Not always dramatically but I’m very useful ways. More able to focus on a conversation so it is two way, far less impulsive, fewer noises made, all help family life 😊

How would this relative know about the medication unless you told them? The slow release ones are one pill in the morning and that's it. They have been a game changer for us. They're also absolutely not addictive like anti depressants or SSRIs, which some of our relatives were concerned about. We often don't medicate at weekends or over holidays to allow food intake to catch up as the med a are an appetite suppressant. The rest of the time we do a high calorie breakfast and offer snacks before bed once the meds have worn off.

Seriously though. Try them on the QT and see. Friendships became somewhat possible, school exclusions receded, work was completed where it hadn't even been started previously!

I was so hesitant but it was absolutely the right decision.

www.amazon.co.uk/Parents-Guide-ADHD-Medicines/dp/1787755681/ref=mp_s_a_1_1?crid=1YM93YINSS3XH&keywords=adhd+medication+parents&qid=1705221357&sprefix=adhd+medicatiion+parents+%2Caps%2C88&sr=8-1

I found this book really helpful. I decided not to medicate my AuDHD child for the moment but it left me feeling very well informed if I decide to in future. She is on melatonin though. My dad is like your unhelpful relative. Thinks doctors are all quacks, despite them saving his life a few years ago, and my mum just bleats "all this is outside my experience" when I try to share my struggles with EHCP etc. Well yes mum - it was outside mine too till I experienced it!

Are there others with SEN in the wider family? My parents cannot and will not speak of my sister's (undiagnosed) probable additional needs...

I think you need counselling so you can unburden yourself of your feelings safely. Where is your partner in all this? Of course someone's got to pay the bills, but you're in an extremely difficult situation here. Could he step up more? Does he really realise how bad things are? Is he using work to avoid them?

I am in a Facebook group for PDA parents and quite a few are single mums whose partners have buggered off after finding the child/children too difficult.

Yours has brought a new baby into an already difficult situation...

On the plus side I've been amazed how my DD has improved between 7 and 11. 7 was definitely a low point.

@Backinthedress I wonder if I could get a med like this in liquid form as I would stand 0 chance of getting DS to take it in a pill form. I would be worried about the appetite suppressant side effect as DS already has ARFID so has an extremely limited diet already that consists only of cheese spread sandwiches, dry crackers, pombears, yogurt and chocolate. It's already a struggle to get him to eat. As for how the relative would know, DS would tell them. Anything knew introduced into his routine like taking medicine he will talk about. And said relative knows I'm seriously considering medicating so would be on the look out for it if that makes sense. I think I will contact his Paediatrician though to discuss the options as I can't go on like this for much longer.

@Phineyj I think the family member in my situation likely has undiagnosed ASD which contributes to their reaction to things and the need to control the situation all the time. It's very difficult.

I am waiting on babies 8 week check up next week where I will speak to the GP about how I am feeling and see if I can get any help that way. Maybe counselling or medication as I feel incredibly anxious all the time which is horrible.

Yes partner uses work as an escape and spends increasingly longer periods of time there but as you said, he needs to work as he's the main earner. He doesn't have patience or understanding for DS in the same way I do as he has never attended any of the courses offered to us when DS was first diagnosed or joined any facebook groups or done any of his own research. I've been the one to do all of that and reiterate it to him but half of the time he just says I'm being too soft when trying strategies from these courses.

I feel incredibly guilty for bringing a baby into this situation and if I'd realised how bad it was going to be I never would have but the situation was different when I found out I was pregnant. But part of me wanted DS to have someone in his life as he is so lonely and desperate for a friend that when I found out I was pregnant part of me thought it could be good for him as at least he wouldn't be alone. Now I don't know if that was the right decision.

That sounds really tough! It's not at all unusual for male partners to behave that way with SEN, sadly.

You definitely need someone in your corner. Maybe that will be the GP. Tell them everything. Print out your OP - it's very clear.

Can you see if you can get a Home Start volunteer?

I think if the paediatrician is wiling to prescribe and you want to having read the book, you may have to jettison the family member's "help". They might come round if you call their bluff.

Your partner needs to make himself available to mind the DC for your important appointments or pay for a babysitter. At a minimum! (I realise finding a sitter would be v hard - we've often used trusted friends as one-offs).

My DH almost certainly has ADHD and ASD (we realised when DD was diagnosed) and he went to Cambridge, became an engineer and has a good career, hobbies and friends. He has struggled a lot with depression and self-image but no more than anyone.

He finds being a parent tough but he tries hard.

Not my child but my husband has autism (PDA) and ADHD.

He was kicked out of multiple schools abd nurseries, had no idea about appropriate behaviour, his mum was told he wouldn’t learn to read til age 15. Was extremely destructive and could be violent.

He now works in financial services as a tech consultant and is a wonderful husband who is incredibly self aware of his struggles and how to manage them.

We were told many kids can essentially 'grow out' of ADHD by their 20s and I have to say it looks like DC is heading that way.

There is no need for people to get irate about this comment as it was a highly regarded psychiatrist who said it and I've since done my own research. Yes it's a neurological disorder but our brains still develop until our twenties so clearly things can change. Even among the most conservative of study (Barkley) its acknowledged that somewhere in the region 14 - 50% will recover from it and no longer meet the criteria for diagnosis. They also said much the same on the specialist parenting classes I attended (requirement in many trusts before the meds are prescribed)

Not interested in a bun fight. What were were told would possibly happen looks like it is and dc are thriving. There's definitely hope.