ASD assessment DS(8yr) - handhold or hard shake maybe

[Mandatorymongoose]

Finally decided after much angst to go ahead with ASD assessment referral for DS(8yrs)and got a copy of his teachers assessment today.

There's nothing surprising in it really, he is who he is, but somehow it makes me feel a bit sad. I know it doesn't really make any difference if he has an official diagnosis or not, nothing will change. I just worry about him and about the future.

He has never been invited to a friends house, he has never been invited to a birthday party, he has not a single friend that he would want to invite to us or meet in the park or at the play centre.

He isn't lonely, he is happy and content and lovely, he is kind to others when he meets them and he shares beautifully. He is thoughtful and considerate. But so very alone. We've been to after school clubs, swimming, gym, computers. No difference. He has no desire to socialise.

His teacher described him as exceptional academically. Quiet, patient, well behaved, doesn't do imagination and sensitive to loud noises. He will pause and think sometimes before he responds.

I don't know if putting him through an assessment is the right thing. I don't think he will like the process, I don't know if it will benefit him. Will the label help him to understand and help others to understand him or will it stereotype him and put him in a box?

I'd appreciate a handhold (or a shake) if you've been through an assessment and found it helpful that would be good to know too.

An assessment is definitely the right thing. It's not a label, it's a diagnosis, just like with any condition.

You wouldn't walk around with undiagnosed high blood pressure would you? Or undiagnosed deafness....he needs this because he'll be able to access more support later...especially in secondary school.

It IS hard I know. I have two DC...one with ASD and one with ADD and a multitude of learning issues.

But the diagnosis gives you a road map....you can help him better.

The fact that he is exceptional academically is a great thing. He will probably have a life long love of study ...and may, when he is older, mix in more effectively with peers. Especially in high school when the pool gets wider.

@FortunesFave you are absolutely right of course, it is a diagnosis not a label.

I have a bit of anxiety about labels as I have a SMI and while it is very well controlled and treated I often think of it as a label more than a diagnosis (for myself, not in general) due to the perception I know people have of it. I think I worry about ASD being seen in the same way. I know people have treated me differently after knowing my diagnosis, my label. I don't want people to treat DS differently (although I would occasionally like people to let him be himself!)

He has never been invited to a friends house, he has never been invited to a birthday party, he has not a single friend that he would want to invite to us or meet in the park or at the play centre.

But..:

He isn't lonely, he is happy and content and lovely,

Your idea of being invited places is Neurotypical and you child probably isn't. If he is happy without doing these things then that's all that matters. Don't feel sad because he isn't getting invited to do things he isn't wanting to do anyway

I don't know if putting him through an assessment is the right thing.

100% it is. I feel really strongly about this. It's wrong to deny a child a medical assessment and if he is autistic then a diagnosis will be helpful. If he isn't autistic he won't get diagnosed. I was diagnosed as an adult, I have come across so many people who have late diagnosis and have struggled all their lives because they didn't even understand themselves. The label thing is bollocks. A duck is a duck whether it wears a sticker saying duck or not.

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I don't want people to treat DS differently

When I was diagnosed being treated differently was something I actively fought for. It allowed me to drop the mask a bit and be myself.

If it helps to know a little about what the assessment entails (and obviously this was during covid times so the process may be a little different in due course), we have just had my daughter's diagnosis and the bits she participated in were an informal chat 2.5 years ago with an educational psychologist which she doesn't remember, a 2 hour fact finding zoom meeting during which she bounced around on our bed and refused to answer any questions, and an hour long hospital assessment in the hospital which I couldn't attend with her due to covid. I thought she would hate it and refuse to go in but the clinicians were utterly engaging, talked to her non stop about her special interests and she has begged to go back ever since.

It really wasn't putting her through anything, the 2.5 year wait we had made us realise 100% that she is autistic, and that not recognising it would be doing her a disservice. She understands herself so much more now, and being able to explain to her that there are other children like her, to read books and watch videos has helped her no end.

Good luck!

@iwilldoitsoon I get that, it's absolutely my issue (currently) DS is fine. He doesn't care for playing with other children. He likes to be by himself. I don't put any pressure on him to be anything but him (as I said, I want people to let him be him) and I adore him. He is a very cheerful soul the majority of the time.

That's part of the reason I worried about the benefits of putting him through an assessment. He's happy. He is coping. He doesn't have any real issues. He is just different to other children.

My main concern really and the reason for filling in the referral is that I think as he gets older he will start to notice these differences more and other children will. That's a worry.

Although, I do sometimes think it is quite sad to never have had those experiences, even if he's not fussed.

That's part of the reason I worried about the benefits of putting him through an assessment. He's happy. He is coping. He doesn't have any real issues.

Lots of parents feel this way. The thing is he is happy now. He is coping now. If he is autistic he will grown into an autistic teen and eventually an autistic adult. This will happen regardless of what you do at this stage. What you do now will help equip him for that future.

@LemonySippet thank you! That made me smile. DS has a tendency to not answer questions at all when he isn't in the mood or just say no and run away to his room. I'm weirdly glad he isn't the only one.
Although at school he would politely answer whatever he was asked 🙄
Apparently our area are getting through referrals quite quickly at the moment, initial referral to diagnosis in less than 9 months as an expected time frame but I'm not in any rush. It is helpful to know a bit about what to expect, the senco gave me a very brief overview which I immediately forgot.

I would go for it. Lots of children seem to be coping in primary but secondary is a different matter. Plenty of parents find they're at the start of a 2 year wait when they need answers quickly. Dd was diagnosed at 9 and even with that y7 was a roller coaster.

The other reason I wouldn't hesitate is that going through it with my daughter we have realised that all the hesitations we had in pursuing a diagnosis with her older brother, we shouldn't have hesitated. He is now a teenager and really starting to struggle so we're just starting off on the waiting list again with him. School brushed off all our concerns with him because he's so bright and wasn't struggling at all. He doesn't have half the difficulties my daughter does so it's much less easy to 'see' but I shouldn't have been so blind and should have followed it through. As they get older those differences become so much more pronounced and while it's society and not the child that needs to change, I really wish he wasn't left feeling so different because he'd had a better understanding of himself all along in the same way my daughter will.

If he’s happy, I’m not sure I see the point of an assessment & diagnosis. Who is it for?

He needs to be at the centre of this & if you feel the process or outcome won’t be in his best interests I’d hold off.

My child had a diagnosis & subsequent EHCP. It actually led to low expectations for her, a feeling of being singled out & different. If we could go back I would do things differently. Her EHCP has now been ceased thank goodness.

I would go for the assessments too. It may not make a difference now, but at some point it may well.
I have an adult version. My son is kind, polite, friendly in his own way, and autistic. He has some learning difficulties too but mostly it his autism that makes him different. He's 24, doesn't go out, doesn't have friends except one (from his special school) can't drive, won't ever marry or have children...
BUT he's a content , happy, loving man. Despite having gone to Special School and with no gcses he has a job in our local Asda and is absolutely loved there.. he does exactly what he has been trained to do and is probably one of their most consistent and reliable employees. He gets his social interaction that way, serving customers and comes home to quiet and his obsessions (he is rainman in his memory skills)

BUT for my son, knowing he has autism has been a GOOD thing. He has a name for being himself, and he wears it with pride!
It also helps open doors to support in the future should he need it!

If he’s happy, I’m not sure I see the point of an assessment & diagnosis. Who is it for?

It's for him. He is happy now. His needs will change over time. The point is quite simple. If he is autistic then he deserves to know. That's basic parenting, having medical assessments when questions are raised. It's for him.

He is happy and coping NOW OP but things often change as children get older. Not trying to frighten you but the teen years bring very different challenges. It's better to get it done now...there's nothing to lose.

It's really helpful to hear people's experiences, both positive and negative.

I do think it's the right thing for DS, otherwise I wouldn't have filled in the forms. I think I just feel a bit wobbly making it a formal thing, that it is a diagnosis, rather than it just being DS being his gorgeous self (although I know in reality there is no difference, all ducks are indeed ducks). It feels a bit overwhelming and scary (for me! not him)but hard to articulate exactly why.

I’m retired now, but I was part of an assessment team. We are gentle, careful and very thorough. We do everything possible to ensure it’s not a traumatic experience. Many of our visitors (clients) found the process interesting.
We did have a few who had concerns and were frightened, every time we discovered that the parents hadn’t discussed things with the child concerned so please talk to him first.
You may feel at eight that nothing will change, it’s an easy going age though. When he hits high school/teens/puberty a diagnosis will be useful to ensure he is understood, his needs are met and that he is enabled to fulfill his potential.
I am autistic.

It can help to have a diagnosis in terms of reasonable adjustments if a child/ teenager/ adult is experiencing barriers in education or the workplace that reasonable adjustments might help address.

I think it's important to remember that you/ your son are in control of the information if a diagnosis is received or not - you/ your son can make judgements about how or if this information is revealed in differing scenarios. You or he might make a call that it is not known to others (but then you bear in mind that reasonable adjustments might not be in place in the same way that they might otherwise be.) Or it may get to the stage that a few weeks or months into an educational qualification or workplace environment he considers that it is an appropriate time to make mention for whatever reason.

My DD received her diagnosis this year. I felt like I had known for some time so by the time I received official confirmation, it wasn’t really a shock. It is helpful in terms of school so that her teachers are aware (particularly when starting a new year) and can put things in place and also understand certain behaviours (sensory issues, meltdown triggers etc). In this sense, her diagnosis is helpful to her, although she is, at the moment, unaware, as I feel she is too young to understand. I found the process interesting, particularly when having to answer questions from the paediatrician as it highlighted a whole range of issues that I think you forget in the day to day adaptations that you have to make (giving warning before change, following routines etc) and it made me realise that actually it is quite hard work managing and coping with some of these behaviours and it is probably even harder work for her! I love my daughter to bits and nothing has changed in terms of how we are with her at home, although I am probably kinder and more understanding. There is a lovely poem called Welcome to Holland that you can find with a quick google that I feel beautifully expresses how it can feel as the parent of a child with ASD.

@Putonabrew thank you for the poem, it is lovely.

I would say we have known really since DS was a toddler, we considered having him assessed at nursery and he was on the SEN register at his first primary school although no one actually told us they were putting him on it or could tell us why so he didn't stay on it when we moved. If it is confirmed as a diagnosis it won't be a surprise to anyone who knows him.

I just want for him to remain happy and content.