ASD/ADHD - could do with a hug and glass of wine to be honest

[Softplayismysecondhome]

My almost 4yr old DS has been diagnosed with autism and ADHD. Sits under at what was known as Asperger’s umbrella (sorry I advance probably getting the terminology totally wrong, no offence intended). He’s beautiful, he’s clever, he’s so, so loving. But also so different to other children his age. My mind races constantly worrying about how school will be, how life will be. Preschool keep fucking up his EHCP assessment request so it keeps getting delayed which is another stress.
I would really like to hear honestly how school and life is for a child with my sons type of presentation, and ways I can help him if he is struggling emotionally etc, but also I guess I really want someone to tell me their son is autistic but is also happily married, good social life, has a job they enjoy etc.
also if anyone can give their experiences with ADHD medication and in what ways they helped if so?
Thanks xx

Aw bless you x my son is autistic also query ADHD but we never pursued that diagnosis. He is now 15 and doing well at school, but primary was awful they couldn’t meet his needs at all. I’m not going to lie in some ways it gets harder when you see their peers leaving them behind socially but he’s got friends, he’s hopefully going to get a clutch of exam passes and get into college. I do sometimes feel sad that he’s not going to excel academically like his brother despite being at least as intelligent due to the assessment system we have but he’s ok. He’s got a nice wee group of friends, largely all autistic or ASD as well.

He is the same wee boy he was before the diagnosis remember :) it isn’t going to change or define him x

I used to work in CAMHS and now work privately doing ASD/ADHD assessments and it has totally changed my view on being neurodiverse. I often see families where the child is being assessed and the penny drops for the one or both of the parents and some time down the line they also a diagnosis. They have navigated life successfully and have probably had a degree of luck in gravitating towards people and jobs that fit their profile.
I know this is self selecting because they can afford the assessment but these are functional, happy families for the most part and often the neurodiversity is the basis of the parents success. FWIW I've also noticed lots of families where ASD men are married to ADHD women and it seems to work really well. I do stress that I know I am working with a very specific population.
In terms of emotional support, get a referral to an OT if possible and get a sensory profile done. Even if you can't try to notice what sensory experiences upset him and which calm him down and adjust accordingly. Try to think in terms of demands in a day (social, sensory and transitions) and that can guide you in terms of how much is left in his social battery.
He will be amazing and special and lovely. This is honestly why I work with ND children- they are the best!

My husband had a diagnosis of Asperger's and ADHD when he was a child. He is happy married (to me). He has the type of job that impresses people and allows us to live a very comfortable life. He has lots of great friends and hobbies that bring him joy.

It's not all sunshine and roses - I think he probably finds his job harder than NT peers, even when he's as talented as them on paper, and his earnings and promotions may never match theirs. His school days were very shit in a lot of ways, even when his parents found a school that worked for him and he was on ADHD meds, and had relatively regular time out of school to decompress. He excelled at academics but found friendships hard and was isolated. Today, he's on medication for anxiety and this gets really bad every few years. Also, one of our DC in pre school is probably similarly NT, so I have exactly the same worries as you. And sometimes their traits clash, which is hard.

But overall, my husband is an amazing man and I wouldn't change anything about him or our DC, other than to make life easier for them. Like you say of your son, they are clever, loving and absolutely their own people.

Almost 16 yo DS, Aspergers diagnosed at five. He is doing well at school, definitely quirk but found his crowd amongst the more cerebral group of kids. Life was tough when he was little, I am not going to lie. We did lots of social skills training when he was young, seems like he is using that training now.

Try not to worry too much, and parent the kid you have. His sibling in NT and such a handful now! Parenting my DS is a breeze now compared to the early years.

Preschool keep fucking up his EHCP assessment request so it keeps getting delayed which is another stress

Focus on that. Of course they're going to fuck it up. They want to pass that shit on to his next place, considering it'll cost them 6 grand.

Then focus on the other stuff.

My advice 16 years in is don't borrow worry from tomorrow.

Mine was diagnosed at the same age, went to a small primary school where he was absolutely fine as the kids were all young and weren't particularly streetwise, I worried so much about secondary -bullying etc but it's a nice school and he's had loads of support and zero bullying, kids seem different to when I was at school!

Not done exams yet, wondering how that will go, he's so clever but doesn't see the point of a lot of things.

He's very quirky, very different, very immature for his age, doesn't have proper friends but isn't bothered either so I'm fine with that. I can really see him with a job and living alone at some point.

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use.

A lad on my son's phase 2 training in the RAF is autistic. He's just passed phase 2. I don't think he speaks a lot but is very much part of the team. They all went out to celebrate the last night of phase 2, getting back at 5am! He went with them & halfway through the evening he belted out a song on the karaoke in a bar, & was brilliant, then didn't speak much again once he sat down. The other lads nearly dropped their pints! You just never know how things are going to turn out. Sending hugs & good luck xx

All mine have adhd and one with asd. Medication has worked well though my asd dc needed a different type - non stimulant to help with anger issues that appeared on teen years.
The first 3 years of school were bumpy for all of mine but once we had started and 1:1 assistance it went much more smoothly.
We talk to ours quite a bit about their asd and/or adhd so understand themselves and their emotions. We had to work quite a bit on social skills as that didn't come naturally.
We have dyslexia thrown into the mix too. I would say it's beneficial imo if they are summer born to defer entry into reception.

My husband has Aspergers syndrome. He is a very lovely man and we have 5 very lovely children. He is not the best at communication and if I want more details about the kids parents evening than "it was fine" then I have to go myself. But my friend's dh is the same and he doesn't have Aspergers syndrome.

My 17 year old also has Aspergers syndrome. He is currently at college doing a course related to his obsession and is living his best life. For the first time he actually has a best friend, who incidentally has adhd. His best friend has been to our house a couple of times and slept over once and 2 of his other friends have been round twice too. I nearly cried the first time it happened. When he was 4 or even 15 I couldn't imagine he would ever have a friend to visit.

My 12 year old is being referred for an adhd and autism assessment. He struggles with friends because he really wants to have friends but then he talks endlessly about star wars and invades their personal space. He is very sweet but also hard work.

Totally agree with the advice not to borrow worry from tomorrow. I should really take that advice myself! I hope the ehcp is sorted soon, that should make a big difference.

Oh and one is sitting gcses, another halfway through mainstream high school and one getting ready for high school.
There will be bumps in the road. But sometimes they really make me laugh so much

Please don’t worry too much at the moment , even with bumps in the road (and we’ve had quite a few) things tend to work out ok

look around your family, do you see any members likely to flag the profile? that’s quite likely to give you an idea of where your little one will end up

My DH DD and DS are all ND and you do worry but they all have fulfilling productive lives, DH has a well paid career and both DC are at Uni. Yes we make sure support is in place but they probably achieve more in life than me with physical disabilities

As for EHCP’s… it took 2 and half years to finalise DD’s I kid you not, it was an unusual one so you need to see education as a marathon. Now in higher education she organises her own support through student finance with only minimal support from me and even advocates and supports other disabled students

My son has ADHD and dyspraxia, and he's 6. He's had a bit of a rough time; his sister died 2 years ago, followed by my Dad a few weeks later. School were insistent on labelling him as naughty, when in reality he was struggling.

Our EHCP is a nightmare too as my sims teacher has embellished it to the point of not recognising the child being described, so I can imagine it's going to tribunal.

My son is a maths genius, incredibly loving and hilarious. He just absolutely dislikes his teacher and a certain boy in the class who makes his life hell.

As someone who struggled horrendously at university with undiagnosed ADHD (diagnosed well into adulthood and medication has been very helpful) is there a reason you haven't pursued/supported your son getting a diagnosis and help so that he could have a chance to fulfil more of his academic potential?

Op I was you once. I felt alone and terrified. My ds is now in the first year of High School in mainstream. Has a best friend and also other friends. Was picked by peers across school for a buddy role recently and briefly had his first girlfriend. He is doing very well academically. Adhd meds have helped with this and he is proud of his autism. Of course there are bumps in the road (sometimes biggish ones), but nothing like I feared.

Lots of good advice from people on here already.

Please do push for the EHCP. We didn’t until Year 5 and it took two years with appeals etc.

Apply for DLA and get advice on how to do that.

Call the Contact a Family Listening Ear line. They cover autism along with all other disabilities and are very good for supportive listening.

Read a book by Dr Joanna Griffin called Day by Day. I wish I had had this when my ds was diagnosed. It’s a truly amazing guide on how we can cope as parents in this situation.

I can't comment as a mother of an autistic son, or give you any guidance in that sense, but I can tell you as a child who has autism, your child has every chance of living a fulfilling and happy life! I was diagnosed with what was called Asperger's and yes, school was quite difficult, particularly getting the school to understand my needs and challenge any misconceptions they had, but I didn't find this limited me in the long term. Autism isn't a smooth road, but there are so many resources and lots of local groups you can likely join to help support you. And in response to your concerns about jobs and marriage etc, I've completed a degree, am training to be a secondary teacher and am in a very happy relationship! So while it may not be easy, please know that your child has every chance of living a truly fulfilling, quality life.

I agree with PP's advice to get an OT referral if you can. NHS if that's available to you, but if it's not (or if it's slow) and you can afford private, go for it. OT was very helpful for my son (not yet diagnosed but on waiting list for ASD & ADHD assessment).

Have you been in touch with your local SENDIASS? They can advise you and might be able to talk to nursery as well.

The most helpful resource I've come across so far is Dr Naomi Fisher, her webinars are great. I also found this helpful: https://www.witherslackgroup.co.uk/resources/understanding-adhd-in-early-years/

It's a bit of a cliche but take care of yourselves, too. It can be a long hard slog.

Thankyou everyone for your replies. When people mention bumps in the road, what sort of thing? Bullying? Struggling to make friends? Meltdowns in school? All of this weights on my mind so much. I worry how vulnerable he is to exploitation, not understanding someone is being unkind or later him being in dangerous situations because of this. I feel sick with worry all the time at the moment.

Mine is doing A-levels and planning on going to uni next year. He was diagnosed with Aspergers but has dyspraxia with it rather than ADHD. He's very much a loner and happy that way but definitely gets on best with other ND teens. I don't know that he'll ever get married but if not i think he'll be happily unmarried.

I know a number of kids medicated for ADHD and it has had a huge impact on their lives. It allows them to be able to engage properly at school. It's definitely something I'd consider if mine had ADHD.

11yo DS1, diagnosed AuDHD at 7. He is top of his class and v popular. Medication has helped a lot, it’s been life changing. He’s a delight.

I would imagine things will get more complicated for him at secondary (socially, work wise) but I hope he’s able to take it in his stride.

The main issue for him is executive function. He needs a lot of help with planning and organisation. I think his processing might be on the slow side too.

Our ds 17 has adhd. he was a wild kid, completely hyperactive, and no focus on anything AT ALL. Had epilepsy then diagnosed adhd age 13 or so. sad to say, schooling has been a bunfight.

First primary school managed him out, and no other local schools would take him. his head teacher called every single school principal in the area, so they all said no. we were a laughing stock, and I felt isolated and very lonely. We got relocated abroad . wasn't much better, but we got a diagnosis. and medication. things are a bit better, and he's less hyperactive, but focus is crap and I worry every day what will become of him. We are all university educated with good jobs, but he flunked his gcses despite being tutored and given extra time and help from his (now back in)uk school.

I wish I could give you great news, I guess it depends on the individual. I see some ADHDers as fun loving happy go lucky types and others, like our ds, as controlling, focusless, unhappy types. As a teacher, I've met a lot of students with ADHD and these are losely the 2 camps. IME anyway.

You need to advocate, scaffold, fight for your child, and learn how to parent a very different personality. I feel your pain. I really do, and I wish you luck.

Be careful with SENDIASS. In some areas they are good, but in many areas they repeat the LA’s unlawful policies. IPSEA and SOSSEN are better.

@Softplayismysecondhome a lot of these things I also feared. My ds was bullied for a few weeks once aged 7 and otherwise we’ve had no bullying at all. Schools are much much better set up now for neurodivergent kids than they were in our day and any bullying of an autistic child in our school would not be tolerated.

My dd struggles socially so key for us has been finding his tribe. He has really good friendships now. For this reason I would recommend going on your FB and searching ‘EHCP in Surrey’ but putting in the name of where you live! This group should signpost you to other local groups offering activities your dc will hopefully love and where they can meet similar dc. I didn’t engage in these groups for years which was a mistake.

Bumps in the road for us have definitely been meltdowns, BUT my ds is developing all the time and has learned how to manage his emotions to a large extent now, so meltdowns are much rarer than they were.

I was told by a very wise autistic adult that many things she couldn’t do at 15, she could by 18 or 25. Our dc have so much potential and while every journey is different you will likely see progress alongside ongoing challenges.

@Softplayismysecondhome a lot of these things I also feared. My ds was bullied for a few weeks once aged 7 and otherwise we’ve had no bullying at all. Schools are much much better set up now for neurodivergent kids than they were in our day and any bullying of an autistic child in our school would not be tolerated.

My dd struggles socially so key for us has been finding his tribe. He has really good friendships now. For this reason I would recommend going on your FB and searching ‘EHCP in Surrey’ but putting in the name of where you live! This group should signpost you to other local groups offering activities your dc will hopefully love and where they can meet similar dc. I didn’t engage in these groups for years which was a mistake.

Bumps in the road for us have definitely been meltdowns, BUT my ds is developing all the time and has learned how to manage his emotions to a large extent now, so meltdowns are much rarer than they were.

I was told by a very wise autistic adult that many things she couldn’t do at 15, she could by 18 or 25. Our dc have so much potential and while every journey is different you will likely see progress alongside ongoing challenges.