Son's asd and adhd. AIBU to worry about challenges ahead? Where do we/he fit in?

[AutumnFairy01]

Yesterday we took our 4 year old son for an initial assessment for asd and adhd. The consultant explained that adhd wouldn't be officially diagnosed until about 5. For asd, our son score high enough on the initial assessment to warrant a referral for the full asd assessment.

I asked the consultant what his gut feeling was with regards to a diagnosis and he said both asd and adhd.

I wasn't surprised by this at all but dh and I still felt a bit emotional. We both work in education so we have experience of SEN but when it's your own child, it feels so different. Ds is a real challenge, from impulsiveness, no fear, going at 100mph, very sensory, destructive, emotional, etc. With autism though, I reckon he will be classed as high functioning. My plan is to now apply for an EHCP before ds starts school which I know will be a big task.

Last night, I was thinking about our friends with children and about other children in ds class when he starts school next September. With all of his behaviour difficulties and neurodiverse traits, I'm worried that he won't make friendships. I'm worried that our friends with children won't include us in social things (it's possible this has already happened but I can't 100% say it's because of ds).

Socially, I would liken ds to taking out a very lively, overly enthusiastic puppy who wants to go up to everyone and jump up! Ds will go up to anyone and just talk AT them. Other children can be very wary of this despite ds being very friendly (never horrible), it's just intense for others sometimes.

AIBU to worry that ds won't have the same sort of friendships because he's got neurodiverse special needs?
At the moment, I don't know where we fit in socially as a family. We don't have any other friends whose children have any additional needs. Can other people out you socially? Has this happened to anyone else?

Sorry, I feel like I've rambled. It just all feels quite overwhelming right now and I'm worrying about ds future. It feels like we will be facing a lot of challenges.

My son has the same diagnosis, obtained privately when he was 8. I’m not going to lie, infant school was hard because he was just painted as a ‘naughty boy’. It’s so so much better that your son has a diagnosis already so things can be put in place to support him. DS is medicated now and has gone from having no friends to lots of friends. He still struggles with some interactions but his friends seem to like him for who he is. The medication allows his personality to shine through whereas before he was deregulated most of the time. He feels things very deeply which can and a bit much for some - but not all. Trying to get him an EHCP before high school as I feel he will need support with social interactions there. It does get better as they get older.

Thank you @thegreenlight
Good to hear that things have improved for your son.
It feels like we're just at the start of the journey and who knows at this stage, how things might go.

I really worry about the 'naughty' label. I'm sure that's what many people think about adhd in particular.

Oh we have gone privately too. Just because I'm trying to do as much as I can before ds starts school and NHS waiting lists are so long! However, financially it is a lot for us but I think it will be worth it.

I can echo a lot of what greenlight said about being a little older and having medication. It also helps that my son has had to move schools twice due to relocation and 3ach time has started afresh and done better with social relationships. He does still have a couple of close friends from his last school though, both of whom I suspect are also on the ND spectrum, although undiagnosed. They seem to 'get' each other.

It was a long road and it is hard to feel they're being excluded or shunned on occasion, but a good relationship with you will see him right and he'll be ok, as will you.

My son has found he has one or two close friendships rather than being with a group of people and they have generally been other neurodiverse people. He does present differently to your son though.

In terms of play dates, i found short and structured - clearly explained to my ds helped.

Not all children are the same, but i would encourage you to see if there are any groups for children with asd/adhd in your area and give them a try. First you will meet some people that understand what its like, and your son might click with some childfen too. It can be a bit tricky finding the right group as asd/adhd is a spectrum disorder so you dont want to gate crash a group set up for non verbal, incontinent tweens. The National Autistic Society might have a list or your local authority on their local offer.

My son has the same diagnosis. School was hard and he didn't fit in the box society tried to put in him to.... But things are changing.

He's nearly 18 now, made it through main stream school with GCSE's c-A* is at college with a group of friends and preparing to apply for uni. He holds down a little job and although he needs extra help with life, he's learning.

The diagnosis was a blessing and he's grateful for all the battles I've had for him.
You son will find his place

Aw, OP, cross that bridge when you come to it. You're doing all the right things.

My DC is year 5 and has a good set of friends and has always been included in parties etc at school. She does get on best with older DC (e.g. through activity groups) and with younger DC but gets on fine with her peer group in school.

We did have a bit of tension with a few other parents over homework but that's all I can think of. And I wouldn't share the views of the parents in question whatever my child was like!

It has been a little tricky with some family members because they don't know a lot about additional needs. Friends have been great though...that's why they're friends!

There is a thread on here in SEN called 'Primary school auties' you might find useful.

In my experience other parents are vastly more understanding, and explain a bit to their DC and try to help them cope, if you share the basic information about the diagnosis and simple advice on how to respond to DC's challenging behaviour.

I now work directly in a special needs setting, but when my children were little I had far less awareness.

My good friend's child was diagnosed at 3 but she chose not to tell anyone, and instead told us her child sought out older children because she was very intelligent. Her child came across as "bossy" - taking charge and insisting that other children followed instructions- and spoilt - tantrums when not obeyed (obviously this was actually an ASD trait of being unable to cope well with children not following "the rules" and behaving exactly as expected, getting overwhelmed etc. but small children and their inexperienced parents don't know this!).

I must say I shielded my children from being forced to play with a "difficult" child who upset them back then. It was only years later when the family were open about the diagnosis (they had moved in the interim so we hadn't seen the child in a long while) that it became very obvious what had really been going on.

Our children actually struck up a friendship as teens after a visit and ongoing social media contact, but I am sure I'd have been more proactive at helping them play together if I'd been more informed 15 years ago!

The early years can be hard but as they grow up well supported teens can find their niche (though there can also be very challenging teen years obviously). One of my children (born years after the situation described above) was actually assessed for ASD but didn't meet the threshold - he has had a lot of struggles but the bigger pool of friend options at secondary school has been good for him, and he has very specific individual friends each from different activities/ places rather than just the crowd of school class/ football friends his brother had at this age.

I'll be honest. YANBU to worry, it's likely to be very tough, and to get worse before it gets better. Yes people might cut you out and yes his friendships are likely to be different. Or experience was tough but please read to the end!

My son didn't get his ASD diagnosis till he was 10 but had always been slightly different, headstrong, tunnel vision, whatever. The things that were cute at 3 & 4 and quirky at 6 & 7, became problematic and limiting for him at 8 & 9. His later primary years were horrific for us, the bullying of us both from children, their parents and the school itself, nearly broke me. Illegal exclusions, illegal part time timetables, my son was verbally attacked every day of y4, I was physically barged around on the play ground twice by a parent. The only thing that saved me was a fellow parent of four autistic boys getting me in touch with a local support group. Some of her first words to me were 'toughen up, buttercup, it's going to be a bumpy ride!', which sounds awful but was exactly the thing I needed to hear and somehow she knew it.

So get geared up, know his and your health and education rights, and get in to any local groups you can. And get a small but supportive friendship group around you that you can be honest with. During what became the worst week of my life prior to his diagnosis I had a friend who would text me every two hours in the day to check I'd managed to get up, get dressed, eat, and wasn't about to curl up in a corner catatonic. The one time I didn't text her back she left work and turned up on my doorstep twenty minutes later with her spare key. You will need these people. Some are fairweather friends, some will step up, and they're not always the ones you think.

But it will also get better eventually. Ds is now 14 and age & experiences continues to mellow & mature him. He's just done a two week World Challenge trip to Morocco with school, is very well regarded by his classmates and teachers, is on course for 7s & 8s in his gcses, is well liked by his scout and judo groups, has a very small but lovely group of genuine friends, and is far more 'with it' in the world than his elder brother. If you'd have told me five years ago that he'd be able to do all this I'd have choked on the hollow laughter.

You will survive the difficulties and you will genuinely smile again. I promise.

OP we had a different experience.

DS was diagnosed ASD aged 12 after his school said he was missing social cues.
We had him assessed privately which our healthcare policy mostly covered so he was diagnosed 6 weeks after it was raised by his school.

He attended a private prep and although he wasn't diagnosed he was always very different from his peers. Quirky, very few friends. But the support he had from his classmates and their parents through his prep education was amazing. The parents made so many allowances for him, asked how he was etc. His classmates always put arms around him and even now they ask about him although they are at different schools. The children knew something was different and they didn't care. If he was sick or anxious they looked for him and looked after him.

We were also lucky that he had amazing pastoral support at the prep school.

No one has ever not invited us out, but we limited ourselves a lot as DS wouldn't leave the house sometimes and refused babysitters.

I don't know what it means long term for his future, but he is happier with a diagnosis and finding his groove at secondary school.

Good luck.

My son's best friend has asd / adhd and has an ehcp. He joined my ds's school at the end of year 4. They're now year 6. I love the fact that he understands that sometimes his friend is angry with him for no reason, it isn't personal, and 5 minutes later or by lunch / next day it will all be fine again. I love that he knows some things are slightly different in their friendship but that it is an excellent friendship all the same. This has been supported by the school and parents on both sides to facilitate understanding and acceptance.

Just thought I'd share this to show it doesn't always have to be a negative experience.

It depends. Every child with adhd and asd is so different.

It’s been hard for my family but I have two dc with extreme behaviours both in different special schools. We can’t have visitors or go to other people’s homes, they don’t have friends and we rarely see family. There is very little they can safely do eg walking, shopping, meals out, play areas, going anywhere at all is almost impossible.

Medication worked very well for a couple of years with my one dc but the side effects were worrying and the doctors won’t prescribe any more.

My youngest son was formally diagnosed at age 5 but had been informally diagnosed age 4. Medication was needed for both day and sleeping other wise he would end up burning himself out. He used to talk at everyone that he met ( in a nice way) and some would see it as strange but others would chat back. He also had no sense of danger and had introduced himself ( aged 4) to all of the neighbours in our cul-de-sac ! I had wondered how they know our names when we received Christmas cards from them and he explained that he had knocked their doors and said hello ! No concept of stranger danger . I had to always be on the ball with school and pushing to make sure that his needs were met but he is now 22 years old and working as an IT tech in a school. He has a small circle of friends who are all ND like he is and has a great relationship with his boss and colleagues. I do still have to remind him to shower and brush his teeth but he has grown into a lovely young man who I no longer have to fiercely protect from the world. I have learnt to let him do things for himself and he will ask if he needs support. Your child will be just fine with you by their side

Thank you to everyone who commented on this. I've just re read your comments and it's comforting to know that other people have found positive outcomes.