Having a neurologically atypical child is isolating

[thegreenlight]

I have a now 8 year old who probably has asd/adhd and I have no mummy friends. His odd behaviour has led to party invitations drying up and his behaviour at other people’s houses mean no return visits. I couldn’t take him to a coffee shop, he can’t cope with soft play and needs constant adult attention. He is silly at school and so no one wants to play with him or build new friendships. So I have begun to avoid people because policing his behaviour is exhausting. I feel very sad that things have turned out this way and very lonely. I have other friends but would never take him round as I know what will happen. It’s ok, I don’t want solutions. I just wanted to vent.

I am sorry to read how you feel. I think when you get an assessment it will help. Ours was amazing as we realised our DD is really bright, just struggles with life! We finally stopped feeling like total failures as parents! We found a great group on Facebook via the PDA charity website.

@2reefsin30knots

Have you looked to see if there are any SEND support groups in your area? Our local Parent Carer Forum runs activities and groups for children and coffee morning type things for parents. You don't generally need a completed diagnosis to attend. You and your DS might be able to hook up with a group of more understanding people.

This is what I was going to suggest. Or you could look into starting one yourself?

I really feel for you OP.

I’ve been listening to these talks

youtube.com/user/AspergersAssociation

These are Autism related but amazingly eye-opening. I’ve learned so much about why life feels how it does for a neurodiverse person and the behaviours that manifest from that. It all makes so much sense!

I think you’d find them really useful for finding the words and confidence to advocate for your son when you’re challenged. Knowledge is power!

Yes. Same here. It is a very painful thing to realise. My heart goes out to you. I had a few unhappy years.

What helped was:

• keep inviting his 'friends' over to your house or out for activities. Parents who refuse to hist your ASD child will usually happily offload their child onto you for free childcare, so at least your child gets some socialisation. This too dries up by Yr 6 but keep it going as long as possible.
• decide not to rely on school gates as a source of friendship. Try to develop a hobby or interest and meet people that way. I joined an online interest group and most of my RL friends either started there or are friends/colleagues of people I met on there.
• develop friendships with people who get it or are totally sympathetic. Our local church is very welcoming and inclusive of diverse families. There are also ASD family support groups in some areas which meet regularly and the parents you meet there will be much more on your wavelength.

Sending sympathies to you OP.
DP had the same. He attended an after school nurture group to interact with a small number of people.

Have a look at the local offer on your councils website - they’ll have details of support groups and activities in your area for people with a variety of needs.

Hi OP etc,

Just dropping in again to offer some info
Ipsea are a brilliant charity and source of information and help. Their mission is to "We help children and young people with special educational needs and disabilities, and their families and carers, to get the appropriate education, training and support to which they are entitled under the law."

I would do some reading but my best advice is learning your DC's specific limits and strengths - and expecting things from him that line up with that. So for instance: if 'Freddy' can be expected to stand in line in the post office for ten minutes, that doesn't mean 'Frank' can; so don't expect him to - but if he can do it for five, there's your chance to praise him for doing that - even if you wouldn't praise Freddy for the same achievement).

Something to remember in all this is that just as education and leisure facilities are required by law to provide adequate provision for physically disabled children to use their services, so too are they required to provide the same for neurodiverse or SEN children. This means that although you have to take the initiative (as I have had to many times) you do have a right for your child to attend school, as well as school activities, trips and after school provision. You also have a right for your child to attend clubs and leisure activities.

I have had to make some very pointed requests - even to an incredibly enlightened primary school - that DS attend clubs and trips that they didn't really want him at. I had to have a very 'hard stare' chat with the head about him attending after school club because as well as me needing it, he needed the opportunity for supervised socialisation - as he didn't have a social group or attend any other activities as they couldn't cope with him - and school days have much less of that nowadays in the school day.

Definitely have a look on social media for support groups - National and local. I have been lucky that lots of my friends also have ND children (and are ND themselves - I am autistic/ADHD) as we all home ed, but in my work - for a SEND charity - we see lots of parents who feel totally isolated, left out at the school gate etc. Support groups are an absolute lifeline, whether online or face to face meets - where other parents understand what you are going through. Of course, we understand here too, and I hope the thread is helpful for you 💐

There are lots of charities who do SEND specific club sessions too, may take a while to find something right for him but definitely worth it. I’m sorry school are being rubbish - agree with getting independent support for that (it’s called SENDIAS here)

OP, have you ever tried rock climbing/bouldering with your DS? It's an activity that can be both social and independent, with lots of room to grow at your own pace. All the holds on the wall are bright coloured and inviting, and with bouldering you can easily try a different route when you get bored. I'm an adult with ASD/ADHD who was a nightmare at primary school, and sometimes you just have to give up on some stuff as it will never suit your child's needs and comforts. Individual sports can be better than team sports, private lessons (for activities, not school) can be better than group work. I'm 30 and still completely unable to do a lot of standard group stuff as I get impatient, bored or distracted. Gaming often suits people on the spectrum and can be great for making friends. I really only started making friends around age 11-12. Soft play is loud and busy and overwhelming. Parties kind of sucked to; I would have loved to have friends at primary school, by being invited to a party is not the same thing and often leaves you being painfully aware you are different. Activities he can do with you around an interest are good, it gives a way for other children who have that same interest or hobby to slowly start interacting with your DS about their shared thing.

My son is ASD and I spent his whole life trying to get him to fit in with his NT classmates and freinds. He is now 20 my advice is stop trying it's a one way path to heartbreak. Do you have close family as mine have always been much more understanding so he could play with cousins ect at parks and soft play. We went on holidays together and so he grew up interacting with family a lot but no friendships. What we have done in later years and I wish I did this earlier was joing activities that are for kids with special needs. So a special needs sports team for example. There he will fit in and you will meet like minded parents all with similar experiences. You dont have to prove his diagnosis for these things.

Also wanted to come back and mention Disability Living Allowance (DLA). You don't have to have a diagnosis to claim this. It takes into account how the issues a child has affect their everyday lives. The way it's written makes assumptions that the person has a physical disability, but as I said above, the law says that a non-physical diability with the same effect is just as valid. So if your child (as mine) can't walk along a road safely - because he has no impulse control and may run into traffic, push his brother into traffic, climb every single wall and railing he walks past and put other pedestrians in danger; that's just as valid as a child with a physical disability not being able to walk a long way down a road.

Likewise sleeping through the night, not being able to get dressed alone, needing constant supervision, needing help eating as he will run off, etc etc all of these are equivalent to physical disabilities with the same effect. If you look on the SEN boards here you will get advice, but I really recommend applying as I got higher rate for my DC when he was 8. This money is for you to use to make your life easier - so you can buy equipment, send him to special courses, get therapy, or use it for respite care - a babysitter so you and DH can have a date night is just as valid a use. You don't have to account for this money if you get it. It's not an easy form to fill out as you have to confront and be honest about stuff you've minimised or internalised - like that you can't take your DC to the supermarket, or to a friend's house, or that you haven't had a full nights sleep for years due to sleepless child.

Cerebra has a guide to filling out this form if you don't have a physical disability

cerebra.org.uk/download/disability-living-allowance-dla-guide/

Hi Op, I have two children with ASD and I think your school are letting your son down hugely. They don't need a diagnosis to provide support, they should be using autism friendly techniques now and accessing specialist advice on how best to help your son.

My youngest also has odd behaviours but it's dealt with very well at school, they use fiddle toys for example to help him during assembly, and if he shouts out noone minds.

Both my children have friends but the eldest has always hated parties, they are too noisy. I've built up his friendships by having individual children round to the house, that's much easier for him to deal with than a group situation. If there are particular behaviours making it difficult for your DS to make friends, you can use social stories to help him learn how to deal better with these situations.

The school can also help him to develop friendships and find children with similar interests

Another thing I would recommend is find something for you not related to your role of parent if you possibly can. I sing in a choir. Some of the other people know about my DC’s difficulties and are sympathetic but it’s not the main topic of conversation. It’s really nice to meet people as yourself rather than DC’s mum.

Oh OP, I feel for you. My DS is 11 and was diagnosed with ADHD and ASD last year.

In his first school he was written off as a naughty and disruptive child. I spent many tearful meetings in the heads office asking them to help me investigate any additional needs and all they would say to me was that he was just naughty.

He had no friends, no play dates, no invitations, parents actively avoided me in the playground. He would cry and cling to my leg and scream that he didn't want to go in. He nearly got expelled for throwing a chair at a teacher after a meltdown and they still told me he was just naughty.

We moved area for work and he started at a new school, within a week the SEN coordinator called me up and said she wanted a chat. They set him up with social skills lessons (ILLI I think they call it) and carefully managed who he sits next to, let him have a comfort cushion to carry around and hug, removed him from situations where he got overwhelmed and supported us through his diagnosis. He's still an autistic kid, but he's a happy autistic kid with good friends who whilst they might not understand his nuances they see the kind, funny and clever boy underneath.

A couple of things that helped us:

Keep play dates in calm neutral territory, a park or a quiet playground. DS couldn't stand people in his space and he was too intense for other peoples houses.

Don't let him get hyper attached to just one friend, my DS would put all his ADHD hyper focus on one child and it would be too much. We have to manage the amount of contact.

Talk to other parents. As daunting as it seems at first, explain to them that your DS has his quirks. Most people are kind and will understand.

Give your DS a hobby outside of school that he can hyper focus on. Mine has discovered photography and is now bloody good at it! Gives him something to both hyper focus on and be artistic about which calms him down. He can also talk the cows to death about it which gives him something interesting to talk to his friends about.

I really do feel for you, I remember the pain of sitting in the playground by myself just waiting for the "Mrs Flumpalot... can we have a chat?" and feeling like no one got my lovely boy but me. It can and will get better.

This is a really painful thing to be aware of. When I had my eldest, everyone wanted to be our friend. He was so well behaved, we were always out and about for groups where I made loads of friends, had lots of play dates, had others round to us, we were never on our own. It was great.

For years later, I had my youngest. He was diagnosed with ASD at 4yo. Before that, I had tried all the toddler groups locally, but gave up as he simply couldn’t follow instructions and got frustrated and disruptive. Nobody ever spoke to me. Not one person.

The saddest thing about it was that I could compare my experience with Dc1 and knew how painfully different it was.

Huge sympathies. I’m not going to make suggestions as you said you wanted to rant. I get it.

I get it, I have no friends or social life now because of the difficulties with two children who have extreme behaviour. I had to stop socialising with my long term friends with their kids and obviously parents at school won’t extend invitations. I am judged on their behaviour and shunned by the other parents. So other than a very small group of family I’m completely socially isolated.

I don’t know what the answer is but I’m 15 years in and not found it.

Do you invite people round? My children are autistic/adhd and can't cope with parties so we have 2-5 friends over for a play date for birthdays but inevitably that means we aren't inviting lots of the rest of the class so I sort of understand we aren't owed a reciprocal invite. I try to maintain / develop friends with other parents when my children aren't there (so at class drinks for example) because I can't really concentrate on socialising when looking after my kids as they require such close supervision.
I'm lucky in that they have both been invited to some parties and have friends albeit not best friends.
Developing friendships with other parents is sometimes good for my kids too- parents are more understanding etc but my kids don't get on with the kids of some friends and that's ok too. I love nothing more than chatting SEN but have to leave the detail to a small number of acquaintances who get it.
It's hard but try not to withdraw as it isolates further. I do understand it is lonely though. I absolutely hate school plays/events because it's heartbreaking seeing the comparison and my children struggling.

My DD12 has ADHD and ASD.

I did private too about 18 months ago because of wait times.

She is on medication (school days only) and it helps massively.

The other thing that has helped is sending her to an all girls private school. Now I know this isn't the path everyone can go down, but the small and quieter class sizes coupled with the really good teaching and pastoral care has been a game changer.

She used to have to mask a lot at primary and clubs etc. it's noisy and problematic for her.

She still melts down, but at home and I just hug her (obviously sometimes she doesn't want this being ASD). They can't control the outbursts or emotional meltdowns so sometimes I just roll with it, sometimes I ignore, sometimes I mimic her and she starts laughing.

Also try and reframe "no" if this causes a meltdown.

The thing to really remember though is that emotionally they are a few years behind their peers. So whilst my DD12 is bright and clever, emotionally she is probably about 9 which is why she struggles with her periods etc.

Finally, it's really really hard but you sound like you are doing all the right things, but you also need to take care of yourself. I found a local (online) support group for parents, it helps me feel less alone.

I regret saying that I didn’t want solutions - the ones that have been offered here have been amazing. Everyone is so kind. I will be making an appointment to speak to the school about their provision, but I also need to come to terms with what he can and can’t do, and stop trying to force him to do things to prove to myself that he’s ‘normal’ he’s not. With that comes his amazing sense of humour and scientific knowledge but it also makes some things harder. I need to know what they are, when he just doesn’t want to do something vs when he actually can’t. He loves gaming and is very good at it (totally risk averse so rock climbing is out!) I will look for groups to help him find his tribe. It’s very interesting to read about hyper focus in friends. He has one friend that fits this description. I don’t think it is as reciprocal and this child is also a school refuser so is in school sporadically. DS is used to support this child when he is in but this is effecting DS quite a lot. I don’t know what to do about it. Thankyou all so much - you have helped me more than you know.

I dont have that much experience- my sons not been diagnosed with asd but I did give up on playdates for quite some time for DS1 who i suspect might have adhd. He would always behave inappropriately and unpredictably. It was a big stress to have anyone over as I wouldn't know how he'd behave. We gave up for quite some time but last year (hes 9 now) we had some playdates which went alot better. I would say leave it for now and try again in a few years time. As long as hes got some hobbies an gets along with his family then thats something. Also maybe try SEN trampoline park sessions if thats something he'd be into? Kids are occupied so you could perhaps chat with some of the other parents. Arrange a playdate with them and then its less pressure if their child has SEN and they aren't from his school. Good luck x

Sympathy and solidarity.

The mix of autistic social difficulties and rejection sensitivity dysphoria is very difficult. I’ve always blamed myself too because I don’t have a strong enough social base myself. I feel if I had more mum friends they might be understanding and help their dc accept ds.

SEN groups didn’t work well for us because ds is one of those inbetweeners who can pass for NT, and he struggles hugely to accept “wrong” behaviour or rule violations.

Your school is shameful OP. Try to keep this in mind and don’t heap the shame on yourself. They are letting all their dc down. I’ve recommended this symptom checker quiz before because I think that being able to use psychological language about these behaviours and symtoms is very powerful. It also puts the onus on the school to meet his needs rather than on you to fix him.

Our school experience has been like HotPenguin. I think when you feel stronger you could consider a change of school, OP. My DD's school is a high achieving prep and DH and I have waited to see if the other shoe would drop for years now but no...they are great to her! Even though she will probably bring down their SATs.

Schools vary so much.

Just wanted to say what a brilliant and supportive thread. I could have written the OP and wanted to wish you all strength and courage.

I've lost friends due to my child not being like theirs. His autism diagnosis has seen a couple of neighbours avoid me completely, not that he ever impacted on them, and others just glare. The most unlikely people have come to light and have been very supportive. It's not quite the same though is it, being viewed differently (not in a good way) just because of your child having difficulties. I still don't have friends with kids who would want to spend time with us though. No advice, I just understand.