OCD, ODD, ARFID, ADHD -how did you know?

[MuchuseasaChocolateTeapot]

I am genuinely shocked by the sheer number of posters on MN whose children are living with these serious psychological conditions and within the spectrum of autism. It is overwhelming to imagine watching your child struggle everyday. Can I ask, how did you realise that your child had additional needs and it wasn’t just being hyperactive/picky with food/normal levels of ‘naughtiness’/fascination to the point of obsession and when there was cause for concern or you needed to take further action (medically/otherwise).

I have genuine reasons for asking. My son had certain tendencies to ordering things to the point of obsession and family members queried at the time if her could possibly be autistic. He’s an awesome young man now but still struggles with his place in the world and I am still at a loss to know how to help him.

my daughter was born with a mild form of spasticity in her legs, when we queried later on whether she should have a proper, firm diagnosis (although it doesn’t affect her day to day life to any great degree), we were advised that labels aren’t helpful and if she had a formal diagnosis of cerebral palsy for example, it would follow her her whole life and affect application forms and insurance because they would just see the diagnosis and not if it would actually affect her performance.

I mean no disrespect in my wording or my questions but I would be grateful for any insight to know how to help my children going forward.

my three are now 38-39 and 40.
although the occasional friend would tell me that they thought my kids had adhd i certainly did not "spot it".
the oldest was always into computers and went into IT struggled in uni (did fine throughout until that point) was having difficulty with some upper level math courses and the school recommended testing. he was diagnosed with adhd the year he got married. takes medication as coffee was bothering his stomach.
the middle child excelled at school (scored in the top 10% for the entire province we live in) and although annoying as a teen graduated from a top uni with a 2.0 average and self diagnosed herself with odd (she certainly has some thought process issues).
youngest :) well no diagnosis, did not do much at elementary or secondary but was very good at sport. focused enough to complete with excellent grades at a technical college with a red seal trade/diploma combination. he however is classic classic and at the age of 38 still "bounces" when happy, has no clue as to the months of the year (odd thing to NEVER remember) but is a hyper happy gentleman (into all sports).
my dd, met and is with, a fellow who has non hyperactive add, he opened our eyes to the obvious. our grandson has rather severe adhd more so than my trio did.

Thank you for your reply. Do you think it would have helped your children to have formal diagnoses? Although I’m aware that things have changed a lot since your children were school age.

I'm a supply teacher and have worked with many, many children over the years. I knew his behaviour, handwriting and concentration was not as to be expected for a child of his age. I asked his school outright when he got to y3. He has adhd.

I realised when my dd refused school over and over.

It started with her complaining of stomach aches, sickeness even faking covid to the point she now won't go at all. The self harm and depression started about a year ago and depression and anxiety.

We have just had the diagnosis of ASD and ADHD. She is 14.

@MuchuseasaChocolateTeapot maybe if eldest was diagnosed earlier (secondary) he would have not struggled for 6-7 years at uni taking half course load and repeating several subjects, which affected his self confidence.
i'm not convinced with dd's self diagnosis, i did on two occasions have her "meet" with a psychologist and dd told me it was a fun visit but boring...she was hard work as a teen and certainly needed psychological help but she wasn't ready to engage.
youngest most likely would have not taken up smoking pot...which i'm sure is self medicating to some degree (legal here in canada and does not affect his work performance).
it would have helped family dynamics though, but in the midst of 3 all in a row the dynamics were always difficult.
i am very supportive of the grandson getting help asap. although diagnosed via a teleconference in desperation. they have tried unschooling with little success and have tried meds (her partners...as a retired nurse this made my head spin) which was very effective but he will need his own obviously the two time trial decreased his appetite severely so hopefully they get professional input.
but again the family dynamics have descended to hell. his two time trial was like day and night and they felt hopeful for the first time in a long time :(.

My daughter was diagnosed with ADHD at 15. With a diagnosis, her school finally stopped treating her as 'disruptive', 'naughty', 'low achieving' and any number of other unhelpful descriptors.

With a diagnosis, she was treated with greater kindness and understanding and has gone on to be predicted extremely high grades at A level.

I have no doubt that without diagnosis and medication, her future chances would have been very, very different.

Thank you all for your replies
@coffeeandeav and @Littlefish it sounds like you are in the same boat, I hope your daughter finds meds work as well as @Littlefish has. My daughter’s friend was around the same age when she was diagnosed with ADHD, she just crumpled after years of masking, she has made it to Uni though and loves it.

@greenspaces4peace you have had to juggle and cope with so much, I’m sorry, but I’m pleased they are doing well now. I hope your grandson receives much more support and understanding than you received for your children x

Until my daughter’s friend was diagnosed with ADHD I didn’t really know any children that were ND, or perhaps they were but didn’t have a formal diagnosis? I’m so surprised that there are so many families on MN who are affected, but perhaps it’s no more than in the past but is identified properly now?

I could have written that post, I homeschooled my dd from that age, relaxed the actual learning part and spent a year sorting out her mental health. Eventually she thrived, picked herself up, found herself an apprenticeship, totally smashed all her exams and is now 20 and forging a career for herself. No diagnosis for her, but we have worked out she is on the spectrum, (I have 2 ds who are diagnosed) I wish we could have had a diagnosis, but I was ignored every time I raised the issue with school or the health professionals.

Good luck and sending you hugs and strength, its tough but there is light at the end of the tunnel.
It's such a shame there's just school through the teens, its so wasted when children are struggling. Its a shame that as a society we can't recognise that some struggle and need a break/change to the school regime. Most will gravitate back to learning anyway, just at a time when they are actually going to benefit and actually want to 'learn'.

From 2 years old it nicked repetitive behaviours in ds - hand flapping, opening a closing doors repeatedly, watching and making things spin (including himself) absolutely loved Hoovers (Henry's) and washing machines 😆

When he started nursery within a month I was pulled in for a chat about possible autism. He would always go to the painting easel when he arrived, would paint or hide under it. Never interact with the other children. Wouldn't sit down at carpet time. Preferred to spend time with the adults asking questions. Very observant.
He is now 8 and just brilliant. Had his special interests. He is so clever and is like an old soul

@MuchuseasaChocolateTeapot I've always wondered if my eldest could have cerebal palsy mildly. Prem birth, emergency caesarian, 8 weeks early due to me having full-blown eclampsia, fits and all. He had a small head, was constantly being measured, but never explained as to why they were so worried about his head. Eventually they decided us parents had quite small heads too and it was just one of those things!
I knew from him as a baby he wasn't right and raised it twice with my GP to be told I was over fussing. He was behind all milestones, had really poor muscle tone (still does), one physiotherapist who worked with us was amazed he walked at all given how poor his leg muscles were. Nursery called me in, as I knew they would, and it was such a relief that someone other than me was asking if I felt he was devolping ok etc. So they started the referrals and I got taken a bit more seriously but my god it was an uphill struggle/fight. No one would ever say what they thought might be wrong, and the attitude was very much one of don't label your child. Which is frustrating when they need help with TA's and the schools need the funding!
We went down the road for an autism diagnosis which he very nearly didn't get, and as his one to one funding at school was hinged all around this diagnosis, I had an absolute hissy fit and they diagnosed him. I feel awful about that now but it was so difficult getting anyone pinned down as to what they thought was going on. I strongly suspect he may have had oxygen starvation before he was delivered, I had at least three fits I know of. He has been diagnosed with the small head thing, that is documented on his records and also with dyspraxia and the possibly wrong autism diagnosis (or maybe he has that too, who knows). He's 25 now and I've asked for help from social services, I've been pushing and trying to get him more and more independent for years but its just not working home here so he and I have decided he is going to move out into an assisted living house where he is going to have to become independent. He also has MH issues, OCD, he plucks hair out of his legs and eats them, they get bleached in his stomach and if he has an excessive session they present in his stools as white strands that he then decides are worms and that leads to him thinking he's being eaten alive. We've struggled with that issue for years, it goes round and round, and I've not been able to get any MH help for him at all. So I kind of hope his carers will have more success getting him that help than I have had. It's been an exhausting 25 years.

I’m so surprised that there are so many families on MN who are affected, but perhaps it’s no more than in the past but is identified properly now?

it’s also due to the fact that people post most when there is an issue.

I have 6 children. One has narcolepsy and my youngest has a life-limiting condition that makes her require constant care, frequent hospital trips and lots of hard decisions. I post about them far more than the other four.

When people are plodding along happily in life there’s nothing to post about. Much like MN would make you think nobody gets on with their MiL, but in reality it’s just that you don’t get threads saying “aibu my mil and I just plod along nicely together. Not besties but not enemies either?”

I have always known my DD16 had autism. She has seen three different mental health practitioners over the years who have all come independently to the conclusion that she should be assessed for autism but she chose not to. That is her choice. She masks quite well and again that is her choice. What made me think of it at a young age was her aversion to being touched, her specific rules which she would not tell us, her extreme refusal to interact with certain adults and her unusual interactions with others children. A close friend of hers recently suggested to her she might be autistic but she remains resistant. That’s her choice. She won’t stop being autistic so she can revisit it later if she wants.

@MuchuseasaChocolateTeapot I also have an 11 year old, diagnosed with autism, he's an absolute brain box, photographic memory, reading age of 16. Absolutely zero social skills lol. He's also awaiting an ARFID diagnosis, only eats crispy beige food and survives on around three to four pints of milk a day. I knew from baby that he wasn't responding as he should, he never did that full on baby giggle, avoided eye contact, he also jumped feet at different noises and would be crying continuously within ten minutes of entering any supermarket. I handed him over at nursery and said to the teacher, there you go, tell me what you think when I pick him up lol. She came out later that afternoon and said to me do you think he has autism because I do! I cried with relief as yet again the doctor had told me just because I had one with autism didn't mean I had another one with it! More referrals and before he started school proper he had been diagnosed by the early years team, so much quicker than it had been with my oldest. He's quirky, and so much more confident than my other two. As the years go by he's getting easier and easier to deal with. (Fingers crossed that continues).

I suspected ADHD from age 4 with my child. Diagnosed age 10 when I had tried everything else lifestyle/ education wise. I did not want her to be like me but when she was diagnosed I had to accept I too have ADHD. Knowing as a child may or may not have made any material difference to my life - but I would have KNOWN and believe me, that would have made all the difference to how I perceived myself and handled challenges. I'm now in my 40s and playing catch up. People keep telling me to slow down but I have 25 lost years to make up for.

If you suspect something, do your child a favour and seek a diagnosis. Knowledge is power and all that.

My daughter was premature by 6 weeks and honestly chattered away from 6 months old but was slow on her motor development (especially compared to her twin brother who was the opposite). She has a slightly awkward walking gait, can’t run for toffee. She has very high arches and hypermobile joints, her hamstrings are very tight and her one knee has dislocated a few times. Doctors couldn’t decide whether she had CP, oxygen deprivation or apparently lower limb development happens at 34 weeks so maybe that was interrupted. It’s largely her gross motor skills that are affected which matters less and less as she’s older but made her feel very sidelined when she was at primary and couldn’t run, cartwheel etc with the others.

I’m so sorry you and your son have had such aa tough and exhausting time. A distant relative of my husband’s had similar capabilities as your son and she moved into a sort of supported living college when she was 18 and it has apparently been the making of her, I think you’re right, with trained staff perhaps they can help him with his MH issues and help him towards supported independence. I hope you manage to get a life back together for yourself, you deserve some fun by the sound of it. God bless x

Thank you all for your kind replies and stories. You are all an awesome bunch and it sounds like your DC’s are lucky to have you.

@YetMoreNewBeginnings i think you’re right, I guess posts are weighted by ‘drama’ for want of a better word, whether good or bad!

@NoSweat my head is in a whirl trying to figure out my son. He is very intelligent (top 1% nationwide) but completely fluffed his A levels. He says he doesn’t know how to revise, his mind works so much quicker than everyone else’s. Buying him a phone, Xbox, computer aged 11 was a huge mistake as he quickly became addicted to the stimulation he receives from them. Before that he read voraciously and was brilliant at chess and loved maths puzzles etc. He has struggled socially since secondary school (although I didn’t know for a long time) and now I’m concerned is is using alcohol to give him social confidence. He is now 19 and is at University but still lacks confidence. He thinks he has ADHD but I’m just not sure and I have no idea how to go about getting him help, would it be a psychologist or through the education route? The problem is now he is 19 that would require him to be proactive in getting help for himself and that would be terrifying for him and so he sticks his head in the sand and things don’t change.

They are such a worry!

DS(4) will not eat anything that is not within a very narrow range of foods (about 5). He will literally starve himself rather than eat anything else. He hasn’t gained weight for two years and it now right at the bottom of the centiles with a BMI below the 1st centile. He will actively lose weight if we don’t provide his safe foods and coach him through mealtimes. He doesn’t recognise hunger and has horrific meltdowns when he’s hungry. His dietician doesn’t know what to do with him but agrees he has ARFID.

We are waiting for a CDC appointment. I know he is autistic because he displays many of the diagnostic behaviours, has sensory issues etc. but because he is very verbal and bright, it’s been an uphill battle to get him the support he needs.

@MuchuseasaChocolateTeapot your description of your son could be me! I am in the process of seeking an autism diagnosis at 30.

My youngest will only eat around five foods too, although his saving grace is the fact he drinks loads of milk. As he got older and matured, we got a grip on the meltdowns and got him to recognise they were linked to him being hangry. We discuss his food and take him shopping to pick things out, and as he got older we've given him all the facts on calories and how many he needs.
We spent years smuggling multi vitamins into his milk, but he found us out and refused to drink milk until we stopped. That led to discussions about how he needs those vitamins, and he now takes a vitamin supplement in a drink of water daily. As he's matured we've been able to reason with him and luckily for us he is listening and doing his best to adapt.
He's just started secondary and has lost weight over the course of his first term, so we are working hard at getting him to eat more. He's ended up with a lot of bad behaviour points and I am convinced it's because he's been surviving the whole school day with just a brioche for lunch. Now the school nurse has confirmed his weight loss, the school seem to be realising that I was right, and he simply isn't eating enough to get him through the day and as a result his behaviour deteriorates. I don't think he feels hunger and that's hereditary, his Dad doesn't either. He's very aware that what he is eating is different to his few friends so he needs the safe space to go and eat and then the time to go and socialise. It's all so very involved and the damn schools always assert they know best so you need to be firm with them. Throughout primary it was the understanding teachers that let him snack through the day that saw the best of him and the strict ones who labelled him naughty saw the worst of him.

It does get easier as they get older, hugs to you, it's so very worrying and draining for you x

I suspected something different was going on with my older son when he was a toddler, then it was flagged up by teachers. However, it was seen as behavioural and probably a parenting issue. One teacher even gave me a book on how to bring up children. Believe me, I'd read all the books by then! My son then started displaying OCD behaviour and I got him referred to Camhs, who were useless. Told me I was 'medicalising' him. An excellent health visitor suggested my son's behaviour was anxiety-based. My son stopped being able to go to school and, to cut a long story short, we sought a private assessment. He was diagnosed with autism, severe anxiety and OCD. He's now a young adult and has had a very difficult life. Currently awaiting referral to the Maudsley for his OCD, which has worsened since the pandemic.

Younger son seemed really easy in comparison, aside from being a bit fussy about food. Never in trouble at school, but also struggled with attendance. Secondary school triggered panic attacks and an eating disorder. We took him out and home educated him. He's a teenager now and has just finished treatment with the Maudsley for ARFID after becoming chronically underweight. Also diagnosed autistic, which we'd completely missed. Camhs have been great this time and he's had a lot of support and is flourishing.

In short, there were a lot of red flags.

@MuchuseasaChocolateTeapot , as I mentioned my eldest was at uni when the problems were flagged by the professor.
they did all the testing and eventually prescribing. If you son is keen to have this investigated I’d start at student health services.

Lots of children struggle a little bit with a few things. Some children struggle quite a lot with one or two things. My daughter struggles a lot with everything and that for us was a big indicator of her being an outlier

@OhWifey very wise words. Best wishes to you and your daughter x

@greenspaces4peace thank you, will have a chat with him over Easter hols x

Picky with food? Eating disorders are a bit more extreme than that.

Anyway, although ARFID is common in people with autism, you can also have it without being autistic.