Son with Dyspraxia and awaiting ASD appt

Hi. 

Welcome to the forum some of the things you mentioned are familiar, my daughter is 8 and still awaiting assessment been trying for years! We also saw from a very young age that she was developing differently to the "norm".  She was rejected on one referral because she can hold a conversation and has a very small number of friends. But it is limited and on her terms and most of the social behaviour she does show is mimicking others. She I also fixated on one friend it is bordering on obsessional. 

I completely understand the picking. My daughter started doing this at 3 she would rip all her nails off and then start on her toes. She then moved on to her teeth at 5. And recently she has started again with the nails, however this time I had done loads of research into stimming and the picking and recognise she is trying to communicate that she is anxious, at least that is what starts it then her obsessional behaviour takes over and she continues. I have been trying to encourage her to tap her fingers or click (similar sensory feeling)  instead that way she still has the outlet without hurting herself. I have also introduced her to to more stimming through movement and this is helping as she is not trying to hold it in. 

Most of what you say sounds like asd, we have almost given up believing that professionals will do their jobs so started making allowances and autism specific changes at home and it has helped massively 

Thank you for replying, your daughter sounds very similar. I sent all my son's reports to the Lorna Wing Centre with a referral signed by my GP (I filled out the form myself and then passed it to my GP secretary to get it signed) and they have agreed to see him for assessment based on what they have read in his reports, I'm just waiting for my GP to sort the funding. The same as you I notice my son nail picking when his hands are down by his side's and he's waiting for something in an anxious way. Like how someone would shuffle foot to foot. He hasn't had a noticeable tic in over a year and I'm thinking this might be his latest "thing". Previous have been ear flicking, eye twitching, shoulder rolling. I got to how you feel with professionals when it came to his speech, they were my listening when I said he had verbal dyspraxia so I went private. The private therapist then got him into a London NHS specialist who gave him the diagnosis that my local authority wouldn't do. How did you cope when your daughter lost her first tooth? Was she ok? My son has word finding difficulties too and easily forgets things. 

She wasn't as bad as expected with the tooth to be honest, she has total meltdowns if she gets a paper cut so we were really worried but we kept telling her before it fell out that it was normal for it to bleed a bit and she was able to deal with it as she knew what to expect, her problem is that she can feel the new teeth coming in and can't stand the pressure in her mouth, this led to her pulling out 8 teeth in 6 weeks. Luckily they were baby ones but she has started trying to pull the adult ones which is concerning! 

It's great the lorna wing centre are going to see your son, unfortunately private is not an option for us at all so we are stuck in the endless loop of referral and rejection at present. 

If your son struggles with wording how is his understanding? If he has problems when things are explained (like losing a tooth) could you use social stories or pictures like comics to show him what to expect. You can buy loads of different ones or make them yourself 

She wasn't as bad as expected with the tooth to be honest, she has total meltdowns if she gets a paper cut so we were really worried but we kept telling her before it fell out that it was normal for it to bleed a bit and she was able to deal with it as she knew what to expect, her problem is that she can feel the new teeth coming in and can't stand the pressure in her mouth, this led to her pulling out 8 teeth in 6 weeks. Luckily they were baby ones but she has started trying to pull the adult ones which is concerning! 

It's great the lorna wing centre are going to see your son, unfortunately private is not an option for us at all so we are stuck in the endless loop of referral and rejection at present. 

If your son struggles with wording how is his understanding? If he has problems when things are explained (like losing a tooth) could you use social stories or pictures like comics to show him what to expect. You can buy loads of different ones or make them yourself 

Sorry to hear of issues after birth. Same here with the family history, his father's cousin has autism with associated dyspraxia and I'm convinced his father is on spectrum high functioning 

Gp in our area will not consider funding for assessment somewhere else as we have services available, it's just a joke to be honest, 

Similar thing with my daughter we considered at first she may have been developmentaly delayed due to issues after birth we were warned that it could happen. She was prem and got group b strep spent 2 weeks in coma on ventilator had multiple clots on her brain and toxic blood gasses caused by complications from ruptured lung. But it became clear to us it was asd as we do have it in the family and we are sure her dad is also on the spectrum.

Have you tried speaking to the Lorna Wing Centre? If your Gp and school support you then Maybe that's an option? Cerebral palsy was one of the conditions I looked into when he was younger because he wasn't breathing when born I wondered if that had caused damage x

Thanks, yes we have the support of the school they agree with me, so does our gp, and the school nursing team and the paediatrician who saw her at 4 but our problem is child development centre and camhs arguing over who is responsible for actual assessment! 

It is difficult when their confidence gets knocked my daughter is now at a point she has realised she thinks differently to her peers and is questioning herself which is why I wanted diagnosis so I could explain it properly, reluctant to without diagnosis in case it causes issues. 

It is fantastic that your son has managed to catch up hopefully with the correct support he will continue to do well, my daughter finished yr 2 with exceeds expectations (apart from pe) but is now slipping a bit as she is struggling with the imaginative writing tasks. She is also isolating herself as she keeps calling people in class stupid for not understanding the maths work! 

You may find his peers start ignoring the spitting as he goes on one class that I supervise at lunchtime has a boy with cerebral palsy who spits when he speaks it was a source of some conflict in yr2 but it stopped quickly and they are now yr6 and no one makes an issue of it 

Im sorry that you are in that loop, are the school good? We domt have money for private either really - we only did private for a year and my partner did over time to pay for it, I had no choice, my son couldn't make sounds by age 3 and the NHS therapist just sent me home with nursery rhyme sheets! I don't blame her, she was young and inexperienced but I couldn't accept what she was saying so I went elsewhere. He will be 6 in July and thanks to that amazing private therapist he can now speak and is at expected levels for reading!! The London NHS specialist couldn't believe his improvement over a year. He still struggles with long words, he lisps, some sounds he doesn't do the correct mouth movement for and he has slowed down speech as in his mind he is lining up the words ready to say them. He spits when he talks which is sad for him as peers comment on it. A regular person might think he talks babyish for his age I guess? He is anxious talking to adults as he went for a few years not being understood so that has effected his confidence