Feeling anxious - DS in autism pathway

[GloGirl]

DS is having a difficult time at school and we've been advised to peruse a diagnosis for ASD/ADHD.

It's making me horribly stressed. I am on the verge of crying multiple times a day. The school runs are a nightmare. If we're having a good time at home I'm feeling guilty wishing all his life was this fun and carefree. If he's having a tough time I'm also feeling sorry for him (and me ) .

I'm debating a trip to the doctors (for me) although I'm aware this is situational - but I'm not coping well. We've booked a holiday in the short term which im looking forward to.

I'm already of the 'nervous' type. Does anyone have any recommendations or resources for parents during this process?

it's tough, I've two kids with ASD and my eldest's behaviour can be challenging at times.

If he is having problems at school they can make a referral to Early Help who may be able to offer you some support which is an option.

Don't feel guilty about going to the DRs, I'm not on medication but many feel that it takes the 'edge off' even where the anxiety is situational.

And remember that even if it is a positive diagnosis it does not change who your child is, if that makes sense.

I could have posted almost exactly that a year ago, there were days I dropped DS off and was in tears before I got out of the school gate.
DS had now been assessed and diagnosed with both ADHD and ASD, things are definitely not perfect now but they are a lot better. The only real advise I can give you is that things can get better with time and a diagnosis does help, although it may not feel like that initially!

What did you find most helpful during this time? Any useful info or resources for newbies? Feel awkward accessing charities etc when there's been no diagnosis. I dont want to talk myself into believing in ASD and finding out otherwise.

I bought a book for £2 on my kindle called autism a practical guide for parents by Alan something. It gives very practical how to advice.

Something that was mentioned at a lecture was that all the practical suggestions (structure, routine, pictograms, 5 minute warnings etc) are great for nt kids. The psychologist said yes thats true of course but they are simply more important for asd. So dont worry about not getting a diagnosis - the suggestions will probably work anyway. Remember that asd is a spectrum as shown in this article. So your dc might score highly on one aspect but be normal in others.

thechimericalcapuchin.com/why-youre-probably-thinking-of-autism-wrong/

Is your DS at primary school? My DS was diagnosed at 8 years old. Primary school was really tough for him and us and I worried all the time about how his life was going to be. He is now 13 and at secondary school and doing really well. He has friends, loves school and is never in trouble. A few years ago I worried I might have to home school him but things worked out far better than I thought. Try not to panic - easier said than done. I wish I could advise you where to get help but I found very little out there unless you have a child who is severely affected.

Thank you. Felt much better after posting and thinking things through.

It doesn't matter if he gets a diagnosis or not in a lot of ways - he clearly has enough traits to warrant testing so structures for ASD will help him.

And this is the most common age for boys to be diagnosed. I can totally understand why as I guess this is when the difference is first seen as clear as it is. Also I understand why it's a bit of a shock if not as many kids would get a diagnosis at 6yo. Sorry I know I'm rambling but I'm starting to feel better.

I think primary school will be rocky. I've ordered those books and for now I wont worry about investigating it a bit more. I keep feeling like a fraud.

Sending a handhold.

We're in a similar situation, just a little further along, I've had so many of the doubts and worries you describe.

Neurotribes by steve silberman. It's not a parenting book or really a book about autism but more like a history of our understanding of autism. It buoyed me up at diagnosis. It really underlined for me that autistic people are different, better in some ways,
and not a faulty version of neuro typical people.

Get to the GP and ask for a referral for him. Write down all his traits. Look at a couple of charity website s to see if symptoms ring a bell with you as things that are your normal are difficult to spot.

It may take two years to get an appointment.

When somebody independent said that they thought dd had autism (aged about 6) I was bizarrely panic stricken. I knew and had been saying so to family for 18 months so why I was all over the place I don't know!
I did find a local autism FB group and between that and MN I equipped myself to handle the processes. It's good that school are on board and getting a diagnosis puts you in a much better position to have adjustments to help him cope at school.
Good luck

Hi OP - sounds like things are tough right now. I just wanted to say be kind to yourself - they did a study about 10 years ago which showed that mothers of children with autism exhibit similar stress levels to combat soldiers. It’s not easy, but you’re not alone. Living with autism can be hard but this is one of the hardest times, when you’re just starting on a journey into what seems like the unknown.

Personally I found Uniquely Human by Barry Prizant helpful as a more positive way of viewing autism. On a practical level, the Autism Discussion Page on Facebook (and associated books) were the most useful source of actual advice and strategies to implement.

Link to book version of the Autism Discussion Page.

You're stressed because your current set-up is stressful, not because your adorable boy may or may not be autistic. If he is, then you can start to access the help you need to make it not stressful. He may, for instance, find the classroom less challenging if he has a TA to mediate between him and the teacher. Remember, as others have said, that your son is your son and a clinical diagnosis doesn't change that.

Thanks everyone, I'm feeling so much better today. I think because I'm talking about it here and getting some great words of wisdom

@GloGirl I hope you are still doing ok! I have twin boys aged 4 and one of them has suspected ASD, but I'm finding it tricky to get anywhere, our HV says it's too early to tell at this age... but like you I find it highly stressful, the meltdowns in particular really get to me.

It has got a bit easier now DTS1 is older and can be reasoned with (in a limited way!) - plus he does tell me if he's tired/ overwhelmed/ finding things too noisy and I take him out and find a quiet place. He's still far too quick to lash out though, which I dread happening at school.

Thank you to @redexpat for the Alan Yau book recommendation, I will give it a read

Sorry if I missed it how old is your ds?

I have autistic 6 yo twins (B/G), and their older sister just turned 9 is also on the pathway.

My dd was on the pathway from 3 and diagnosed at 5, my ds was only put on the pathway in reception, and diagnosis was at 6.

If the school are on board, that's half the battle. All 3 of my children had support and plans in place before diagnosis. It's about looking at what the individual child needs regardless of the label.

Find out what the local council provision is, sometimes called The Local Offer. Ours does pre and post diagnosis training, including "early bird" for younger kids. There a number of charities. Google for local ones.

It's a long journey, but all the things that will help and support your son, can also be beneficial for most children, so no potential harm and lots of possible benefit.

To be honest nothing actually changes, once it's official. My children are still the same fabulous individuals! But it can open some doors and help you to support your son in the right way.

A tough day for me with DTS1 going into meltdown at the end of the day... my hat goes off to you @WishThisWasLangClegGin with three DC on the pathway!

(Thank you for the tip about the local council by the way, I've Googled it and found some useful info. For some reason our local services don't seem to be centralised, there's bits and pieces everywhere, which makes it tough to track down help.)

Does everyone here have support from their DP? I've tried to broach the subject with mine of DTS1 perhaps not being NT, how different he is from DTS2, etc - but he won't hear of it and just says he needs to 'listen more', 'grow up a bit' etc. All my coping strategies and ways of heading off meltdowns are no use when DP won't listen!!

My DH was reluctant to believe a diagnosis based on my reckons, understandably. As the experts and teachers have come on board, and our son's behaviour has got worse, DH has come around in his own time. I think what really helps is that most children benefit from strategies that ASD children benefit from.

Our child is definitely more ADHD end of the spectrum so all the early intervention stuff we implemented was with that in mind. Every single behavioural technique we picked up from ADHD handbooks worked well.

So I would say to my husband "It doesnt matter if its ADHD or not, I still think X is a good idea." There is little practical resistance someone can give you if you are being reasonable and coming up with a fair strategy. For example - countdown warnings towards the end of a fun activity; or a plan for the day so that they understood the next step etc.

I'm feeling better this week. I've spent so long asking everybody we've come into contact with and they've all told me he was perfectly normal. The upsetting thing is in some ways I feel like he's regressing and becoming more difficult. Perhaps as he's masking so much at school he is unleashing a little at home. Did anyone else notice their child become a little more immature? We're getting a bit more of a baby voice, a bit more of a reluctance to leave the house etc than he used to be like

To add, he was 7 last month.

We found 7-8 the most difficult age (so far) - DS was actually diagnosed at 7 because he was finding it hard to hold it together any longer. There is a lot more pressure at school to sit still, concentrate and behave at that age, which is tough for ADHD kids in particular. In addition, they are becoming more aware of other people socially and of the world around them which emphasises ASD challenges. Our DS’s anxiety went through the roof, which led to a very difficult time and ultimately his diagnosis.

He is 10 now and things are much easier (although not without challenges) - a combination of using different techniques to manage anxiety and behaviour, medication for focus and concentration, teacher support in school and DS maturing and becoming better at managing some emotions himself.

Re your DH - I think many of us have been through similar. At an early appointment my son’s psychiatrist asked me how DH had taken the diagnosis. She said in her experience fathers are about a year behind mothers in recognising and coming to terms with a diagnosis.

What sort of strategies helped your son @ILikTheBred

@GloGirl

After he was diagnosed I hadn’t a clue where to start. We were pretty much just handed a piece of paper and then left on our own. I ended up just spending a lot of time watching him. Anxiety was his biggest issue at the time so we spent a lot of time trying to spot things which triggered the anxiety and meltdowns. I didn’t have this book to hand in the early days but looking back I loosely followed much of the advice given here: Autism Discussion Page

I think the biggest thing for us was picking our battles - When I realised just how often we were correcting him and pulling him up on behaviours which are in many cases beyond his control or unintentional I got quite upset. Putting myself in his shoes, I realized that he was walking on eggshells a lot of the time because he was constantly afraid of being criticised for something (both at home and at school), and oftentimes he had no idea what he had done wrong. So I decided what my red lines were behaviourally (no hitting things or himself, homework needs to be attempted etc) and let the other stuff go. So his table manners aren’t necessarily where I’d like them to be, he loses things constantly and he gets a bit too much screen time but he has relaxed a lot because he feels safe. I suppose you could say we try and focus on letting him be himself rather than trying to make him ‘less autistic’ - which we didn’t even realise we were trying to do.

Exercise has been hugely important, both in terms of helping the hyper side of his ADHD but also lessening his anxiety. Simple things like walking / scooting to school rather than driving have really helped. It makes him feel regulated - we did a bit of Occupational Therapy which was mildly helpful - a trampoline and yoga ball has helped a lot too.

Managing transitions (eg stopping one activity and starting another) can be a challenge for people on the spectrum so signalling things in advance eg saying ‘you have five minutes of tv left and then we’ll have dinner’, rather than ‘turn off the tv now!’ helps to keep life calmer.

I’ve also stopped feeling like I have to make him do certain things eg go to certain parties which I know will be loud, join in certain activities etc.

We did a bit of work around trying to help him recognise when he was feeling stressed and breathing exercises etc to help but it didn’t work that well when he was 7 - I think he was just too immature. It’s a bit better now.

Medication for his ADHD has been a huge help - looking back he was hugely stressed as he was trying so hard in school but couldn’t keep his focus on the work he needed to do and his self esteem was low because he felt like he was stupid relative to how the other kids were performing, which wasn’t the case and wasn’t his fault. The medication has helped this anxiety massively as he now has the ability to get through his work and do well in school. Also, being told of his condition has helped too as he no longer feels it’s his fault that he behaves in certain ways - it’s down to his ASD/ADHD.

I think I mentioned it a few times before but I really would recommend the autism discussion page - for example there is a series of posts there at the moment around helping ASD kids understand things which is very good: Guidance. It really was the single most helpful source of information for me personally. I also copied some of the pages from the book for his teachers. We’ve also been very fortunate in that his school has been very supportive, and he himself is on the more ‘Aspergers’ end of the spectrum - in relative terms we have been quite lucky.

Just wanted to add - I spent at least a year when he was 7/8 waiting everyday at the school gate with a knot in my stomach in fear of how his day might have gone and whether he would explode or otherwise. It was horrendously stressful so I really do feel for you. I can’t believe how much better (although not perfect) things are now so I hope your trajectory is also positive from here on.

@ILikTheBred - could I ask how you dealt with the hitting? DTS1 (4) is still hitting and scratching on a regular basis, and I'm right at my wit's end with it! Doesn't help that DTS2 winds him up but then bears the brunt of it - I don't know how much of this is typical 'twin' behaviour but nothing I try seems to work (kind hands reminders, reward charts, explaining that we can't do x because they are so awful to each other, etc).

Makes me really sad that I never arrange playdates or take them to softplay but I just cannot watch him 100% of the time and I dread him lashing out at another child. He did it when he was small and the HV said it was his way of communicating and things would be better when his speech improved and/ or he had grommets fitted; nope!

Thank you for your really interesting post though and I'll definitely look into those resources - it particularly struck a chord about letting him 'be himself' - DP just thinks he needs to grow up/ behave better etc but I don't think that's the case.

I do feel guilty for DTS2 though as we are limited about what we can do that won't send DTS1 into a meltdown; they've been to a kids club for a couple of hours today so I could go to a doctors appointment and he enjoyed it, but afterwards it was straight into bad temper, grumpiness and then meltdown. DTS2 does make allowances, bless him, but I still feel bad that he has to put up with this all the time

OP, your opening post rang so many bells for how I was feeling ten years ago. My DS is now 17 and having his diagnosis (Asperger's) has helped both us and him. It's helped us be more patient because we know that much of his behaviour is not totally within his control. It's helped us to prepare him for situations so that he can cope with them - role playing has become a way of life, as have check lists! And it's helped him to understand himself, especially as he's got older and has read multiple books about it.

In the meantime, be kind to yourself. It's not selfish to wish that his life was easier. But without his quirks he wouldn't be the same little boy that you love. A diagnosis will just help you support that lovely boy to the best of your ability. X