DS assessment- aibu?

[Furiousfive]

I was asked by my son's school to take him to the GP to ask for a behavioural assessment a few weeks ago. This wasn't entirely a shock: we've suspected for a while that something wasn't quite right; he's always been challenging at home and school - it got to the point last year where his teacher mentioned a meeting with the senco but then inexplicably his behaviour calmed down a bit. However this year (year 3) his behaviour issues have become more evident: social problems with his peers, extremely emotional about minor things - running out of class, shouting, hiding under the table, as well as impulsivity and repeatedly making noises in class, tics etc. Also very difficult at home.

NHS waiting lists are obviously massive and I've read that getting an assessment for ASD or ADHD can possibly take over a year. With this in mind, I've been reading up to try and get some ideas of techniques to help him (and me!) as I feel out of my depth and its hard for me to keep calm when he's being very challenging.

However dh won't read anything or discuss it with me. He says he doesn't want to diagnose him before he sees the consultants and its pointless to read anything as it may make him look at ds differently and make him see things that aren't there. I think we need to be informed as even if ds isn't diagnosed with anything, it might at least give us some strategies to help. I feel quite isolated as he refuses to talk about it, and am feeling quite down as have nobody to confide in. It isn't even as if he deals with him more effectively than me; if anything he's less patient - I think he should be researching this a little so he at least has some information when we see the specialist. Aibu?

Does DH have autism?

No. Why?

Maybe put it to your dh in a different way to show him how stupid he's being!

Ask him why he thinks it's right to carry on with what your doing despite it making you all miserable.
Ask him if his car, computer, TV etc was broken but it worked a different way whilst you waited for it to be diagnosed and fixed would he stop using them?

(I don't mean to sound like asd etc can be fixed but strategies do work!)

My ds is autistic. It's amazing how much difference the right approach makes.

I'm a firm believer in putting things in place to help the behaviours/difficulties, not the diagnosis.

I have 1 dc with ASD and ADHD diagnosis and 1 dc with ASD diagnosis (and one nt). Absolutely nothing changed in the way me, dh or school dealt with any challenging behaviour when either of my children got their diagnosis. We would have all used certain techniques and approaches whether they were diagnosed/not diagnosed/on a waiting list or not purely because it benefits the child.

If using certain techniques help your child, and consequently you and your oh, then it is irrelevant whether your child gets a diagnosis or not. You're simply helping them because they are your child and you love them.

Yanbu!!!

Do as much research as you can, you won't be able to "make" him autistic by parenting differently, if he is autistic he was born with it and will be autistic whether he's formally diagnosed or not.

Some parenting strategies suggested for children with ASD work very well for NT children too.

Nowadays sensory processing is included in assessment, you may find some of the things in this booklet useful. www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

From threads in the SN boards, it's very common for some fathers to not be actively interested in the diagnostic process, some are very oppositional and when the child is assessed, it becomes apparent that the father has traits or is indeed autistic himself.
Sometimes the mother recognises traits in herself, but generally mothers are less oppositional to diagnosis than fathers.
Look online for the AQ test, it gives an indication of different behaviours autistic adults may have, but I'd not float that as a suggested topic for discussion with your DH right now. Also not all autistic children have one or more autistic parents, it's not that clear-cut.

Your son is communicating with you the only way he knows how, behaviour is communication, he's telling you he's overwhelmed and he needs help, but he doesn't know what's overwhelming him.

Anything you can read that will lessen your son's anxiety and keep him on an even keel will help. Read about transitions, see how your son reacts to them. Try now and next instructions, then try now, next and then instructions to see if they help.

Try the SN boards on MN for starters, lots of helpful posters who have been where you are now.

Thank you for the replies and advice. I'm going to show dh this and hopefully it'll give him the shake up he needs. Thanks for the links too - these are really helpful!

My DD is 10 and was diagnosed with ASD last Easter, and we started the process in early 2017. Until last Christmas my DH wasn't really on board and thought she was just "spirited", and I just maintained the line that having more structure and more ASD friendly parenting wasn't going to hurt, even if I was wrong. Last Christmas was really tough, despite (we thought) making adjustments not to overwhelm her, and at that point he came round and accepted there was something different about her.

I sent him lots of links and books but I'm not sure how much he read, but I've had to back away from that and just leave him be- I've enough on with 3 children and I'm not going to parent him. He knows where the resources are if he wants them. It felt really lonely for ages, and I felt like all I could do was keep on going with the process.

BTW school were great, even pre diagnosis, and that helped a lot even when he wasn't on board. I hope you get the support you need.

Please pm me if I can help at all.

Your dh is being unreasonable, and also probably in denial.
I would carry on doing your own thing, and hopefully he’ll see the positives. There’s a book called ‘the explosive child’ which might be helpful. It’s not specific to asd, but is helpful for children who appear to have big reactions to what we would perceive to be small events.

I assume if you were asked several weeks ago to see the GP you have had that appointment. Has he or she referred your son to CAMHS now? Maybe you could use that referral and tell your DH that there is obviously something not right the question is what and you and he need to be as prepared as possible to make best use of the consultation when it comes.

You are not unreasonable to want to research strategies to help him in the meantime. I suggest you do that yourself and then tell your DH what you think will work in this waiting period. His stance, whilst unhelpful, is not at all unusual and you will likely struggle to change it.

Dealing with this on your own must be very lonely. I hope you have friends and family who are supportive.

Thank you for the support and kind words - it helps to know others are going through similar, as it feels like everyone has the perfect child at school (even though I know it's not the case) and I have the difficult one. I've ordered the Explosive Child book - the description on the front is certainly apt.

We are still awaiting our referral as the GP said it would take 2 months. That's another thing that DH and I have a different view on: I think we should go private for at least part of the assessment (his parents have offered to help financially) but he thinks we should stick with the NHS even though someone I know had to wait 18 months for a diagnosis.

Ask your husband if he were having chest pain or a severe headache would he sit home patiently waiting on an NHS assessment or go privately as offered? Denial or not tell your family offering $ you accept and schedule regardless of his input esp if he's unwilling to read and learn

My DS was diagnosed with HFA and ADHD at Y3 as well. I strongly suspect FIL is also on the spectrum and DH has traits. DH engaged with the process to a certain degree, attended appointments etc but never did any background research or reading. TBH DS is very mild and in many ways neurotypical, so it hasn’t caused huge disruption to our lives although I wish DH was more forgiving at times when DS plays up. Usually there is a cause that he doesn’t see - but I suspect that is his own HFA coming out.

However, at the time we were in the process with DS I knew two other families going through it. One couple split up because the husband couldn’t accept the diagnosis.

I think the question of whether your DH is also on the spectrum is sensible as that does play into how he deals with / understands the condition.

Going private was never an option for us but we went from speaking about concerns with the school to formal diagnosis within 10 months on NHS.

I think your DH is getting confused by the difference between a label and a diagnosis
He’s sticking his fingers in his ears and going “lalalalalala” and it’s not helpful. Once your son gets his diagnosis it may (hopefully) make all of your lives easier and your DH needs to realise that. Nobody hopes for a child with AN but if yours has them ignoring them won’t make them go away

Time from seeing the GP and raising concerns and asking for a referral to diagnosis is 18 months to 2 years in most areas on the NHS, their services are beyond stretched.

Your GP's surgery should be able to give you an idea of how long that waiting time is in your area for a full NHS assessment.

Diagnosis procedure www.autism.org.uk/about/diagnosis/children.aspx

I would advise you NOT to go for simple screening tests, parents pay hundreds of pounds for these only to be told their child is "likely" to have whatever condition they have tested for. Some couples that have one reluctant partner find this gees the reluctant one along to spur them on to ask for a full assessment and diagnosis, but it's a very expensive way of doing it if you already know your child's behaviour is markedly different and school are also on board.

Do make sure if you are paying for assessments that they are carried out by qualified medical staff and that there will be a full assessment done.

The ideal non-NHS assessment would be carried out privately by the same teams of professionals (often Paed, Ed Psych, OT and SLT) who also work part-time for the NHS.
If you can find that type of assessment, then school and the Local Authority have to accept that diagnosis.

Once you mention autism you'll find everyone has an opinion and many people absolutely dismiss the idea because of a whole host of spurious reasons. As parents we're told to listen to the professionals, but in the case of autism, some professionals are really not worth listening to. Teachers and GPs who are both not qualified to diagnose autism can come out with rubbish like the child cannot possibly be autistic because he made eye contact or showed a sense of humour or doesn't have a special talent or we are all on the spectrum somewhere, why do you want to label your child, or many of the other untrue statements about autism that are unfortunately popular. Please treat their opinions with a pinch of salt, ask yourself 'Is this person qualified to diagnose autism?' And if the answer is no, then remember that their often misguided opinion isn't fact.

Labels are for jars of jam, medical diagnoses of autism and other AN can help schools to access funds to provide a much better learning environment - we all know it shouldn't be so, all children should have their educational needs provided for, but sadly many schools won't fund certain interventions for children unless there's an acceptable diagnosis in place.