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Suspect ASD first appointment, just want someone to talk to

(16 Posts)
shakinstevenswasmyfirstlove Mon 08-Feb-16 20:53:27

Okay here goes, just want someone to talk to. Firstly this will be very identifying to anyone I've confided to on this but hey, if you are reading this hello! I'm sorry it's a bit long!

Suspected for a couple of years but only have one child so no comparisons and have explained away behaviors and basically been in denial. Started the ball rolling about a year ago just before his 6th birthday as we were struggling to cope and the differences with his peers were becoming more pronounced as they all grew older. Been batted backwards and forward between CAMHS and Pediatric services for almost a year with no one wanted to see him and finally have first appointment with developmental pediatrician coming up.

No significant language delay but selective mutism(not diagnosed, he wouldn't speak to anyone outside family and close friends until recently) and social anxiety however he is good and unassuming at school and reasonably on track. School Senco however is on-board and supportive. Behaviour at home has gone from quirky, explosive and obsessive to very difficult. He is obsessed with routine, with his days and every activity timed to the minute and ensuing meltdowns if not adhered to. He has to control everything and we struggle to leave the house. He plans his day with precision and activities cannot be interrupted, He cannot cope with any situation which doesn't match his expectations, cannot control his emotions and won't discuss his feelings at all, he is becoming more and more isolated and just prefers to play alone all the time (at home not at school) with a select group of toys. He copes at school and I think thrives on the routine and order but it all falls apart at home and weekends and holidays are really hard. Anyways there's lots of other stuff, chewing lack of motor skills, face blind etc etc but I've gone on long enough!

I flit between thinking I must just be an ineffective parent to being adamant he is neurologically different in some way. DH was the same but now is the latter. We have the first appointment coming up soon and part of me is convinced we will be fobbed off as no major problems at school and part of me is terrified we won't be and they'll suggest we need assessment.

I don't really know what the point of my post is, just wanted to talk about it. Thanks in advance for any comments

PolterGoose Mon 08-Feb-16 21:13:31

It sounds like there's something going on, doesn't it?

My ds is also an only child, but I knew from teeny there was 'something', other people dismissed my concerns, eventually diagnosed at 6yo. It was the best thing, he is 12 now and very proud of his AS, even though it makes life bloody hard, but I think he will be OK.

shakinstevenswasmyfirstlove Mon 08-Feb-16 21:26:24

Oh Polter that is just the best thing someone could have said thank you flowers

PolterGoose Mon 08-Feb-16 21:40:16

Oh good <wipes tear>

He still takes a lot of managing, and we have a lot to work on! But his progress and self-awareness is astonishing. He knew he was different before assessment, he's very perceptive, and loved/loves having a named condition. I've been diagnosed with AS too and he's not very happy that he's not the only one in the house, he likes to be unique grin

shakinstevenswasmyfirstlove Mon 08-Feb-16 22:35:09

That's great Polter and no doubt in large parts to your efforts. I know in my heart of hearts but dismissal by others has made me question my instincts, even doubters now though are getting on board as things become more obvious to others. Bless my wee man, i just want to help him

shakinstevenswasmyfirstlove Tue 09-Feb-16 20:55:33

Just read an article in paper saying there is a crisis in Autism Assessment for Children in Leeds with only 5 being assessed in the last 6 months of last year from a waiting list of 140! It is no wonder we struggled to get an appointment. I suspect we will be low priority and told to jog on, is there benefit in pursuing private assessment?

PolterGoose Tue 09-Feb-16 21:19:44

If he needs a diagnosis for his needs to be taken seriously (shouldn't be the case but it was with my ds, he was easily written off as horrible naughty child of crap parents, so diagnosis was essential) and you can afford it then it's something to consider. But, if it's not urgent then I wouldn't, money can be better spent elsewhere! Whether he has a diagnosis or not, you will be his number one therapist. But you've got first appointment coming soon, if they can't assess him yet but agree there are clearish signs ask them to give a 'working diagnosis' pending full assessment, this can be enough to get you taken seriously.

shakinstevenswasmyfirstlove Tue 09-Feb-16 21:40:50

Thank you for replying Polter. That's really helpful and thought provoking. Do we need a diagnosis right now? when I ask myself that question the answer is no for school but yes for my own sanity! So basically not to get his needs met but mine which is not the priority! I guess it would give me confidence in my parenting rather than thinking maybe I am failing that's why the super nanny stuff does not work and I'm ashamed to say I want to be able to say "look he can't help it, I do not need to be tougher on him' to family and friends who I know think differently. I guess I need to get over myself and step up. The being his number one therapist I know is true but it scares me, I don't know if I'm up to the job it is so emotionally exhausting. The working diagnosis is a great idea. Thanks again, it means a lot to me to have a stranger behind a screen respond smile

PolterGoose Tue 09-Feb-16 21:46:51

I think you've got a very valid reason, you'll be able to parent him better and more confidently, and advocate for him from a better position, if he gets a diagnosis. When ds got diagnosed the paed told me, I cried happy tears and she said "I can see that you need this". She was right. Good luck, keep posting smile

shakinstevenswasmyfirstlove Tue 09-Feb-16 21:51:17

You are wise smile Thank you I will

JsOtherHalf Wed 10-Feb-16 18:34:34

Yes, Leeds is experiencing huge waiting lists. They are also buying in assessments in other local CCG areas. This then causes a knock on delay in the assessments of those areas.
Some areas of west yorks now have lists of almost 4 years for an autism assessment for children.

sad

AdriftOnMemoryBliss Wed 10-Feb-16 21:43:15

its VERY common for people to be dismissive before they're 7/8 because they think its just normal and they'll 'grow out of it' then they suddenly go 'oh shit... actually' and have to scrabble.

At least thats what happened with us, we got ignored until he was in yr2 and the last 2 years have been a roller coaster of OTs, Paeds, CAHMs and EHCP assessments!

Your boy does sound like something is going on, as long as you are clear and concise about your concerns and WHY you have them, you should be fine!

shakinstevenswasmyfirstlove Thu 11-Feb-16 10:58:58

Thank you for your comments it's much appreciated, i do think there is sn element of putting us off till he's older though he's getting worse not better. 4 years is criminal isn't it. Poor families!

twinkletoedelephant Thu 11-Feb-16 13:52:19

One of the dts was assessed last year (at school which was awesome for him as he is happy there) his twin was dx last year as mod to severe adhd..with autistic tendancies.
They are now 7. We are still waiting for dd 9 to be assessed waiting 6months so far. I am 100% sure she has it and desperately need help managing her behaviour which will be easier with a dx.
For us having a dx didn't change our daily life. It has helped the school find ways to help him achieve and we are very very lucky both schools are so supportive of our children - even with classes of 30 they still get the individual attention they need - both boys have a 121 who don't always sit with them but is watching and helping all day.
It was helpful in explaining to family that he does/dosnt do xx because of his autism and yelling cajoling threatening won't make a blind bit of difference.

To be fair all dhs family have read up on asd and accept that boy2 is literal so they only say what they mean and always mean what they say.. Boy1 needs running about space and plenty of breaks to move and wiggle, so plan our days accordingly... seeing the boys posh godfather taking us to lunch at a soft play rather than the usual naice restraunt was fab... he had called ahead to ask about loud music as well....and even had a go on the big slide

My dad is just waiting for the children to grow out of their autism..... it seems he has passed over his own grandchildren in favour of his new wife's great grandson who is the same age but dosnt have any issues...

Guess who the children want to see ;)

shakinstevenswasmyfirstlove Fri 12-Feb-16 07:24:25

Thank you Twinkle, sounds like a mixed reaction from family. Great to hear such positive news about school.

shakinstevenswasmyfirstlove Mon 15-Feb-16 22:07:18

Just to update, saw the paediatrician today, said points to HFA and referred to CAMHs for assessment so just waiting game now.

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