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DS with possible ASD pulling his hair out and leaving bald patches - what can I do?

(21 Posts)
skidd Fri 09-Sep-11 10:15:41

Hello,

I have posted about my DS before. He is 3,9 and has some difficulties which may or may not turn out to be ASD-related. More than anything he is very anxious, and recently this has shown itself in him pulling clumps of hair out of his head. He has a bald patch now and I have tried giving him worry bead type things, holding his hands, asking him to try not to do it, but at the same time I wonder if I am making it worse as it is a way for him to relieve stress. I think it is particularly bad atm because he is starting pre-school (mornings only) again on Monday after a difficult time there last year. He also has some bowel issues (soiling himself) which also seem to be worse with stress.

Any advice on how to deal with this? I do lots of hugging and soothing and talking but it doesn;t seem to be having any effect.

Thank you

Claw3 Fri 09-Sep-11 12:39:30

Ds has similar behaviours and sufffers with severe anxiety.

Is he getting any help in pre-school, would be my first question for anxiety, not getting the right help in school for his difficulties is the main course of ds's anxiety.

What i have been told to do by OT, CAMHS etc when he engages in such behaviours (although he still engages in them, because he isnt getting the help in school)

1. Do not ignore, but do not draw attention to it makes it worse (although admitted this hard to do, when they are damaging themselves)

2. Instead distract, for ds this involved letting him play on ps3 and hand held games, to occupy his hands in an attempt to break the behaviour which quickly becomes a habit, despite whatever it started of as.

3. From a sensory point of view, it can be down to too much sensory input, or not enough, the child then engages in this behaviour to either gain sensory input or block out sensory input, when anxious.

In ds's case it was thought he was doing it to gain sensory input, so lots of exercises, jumping on trampoline, pressure big bear hugs, wrapping in quilt and gentle squashing, pulling him ie one person getting his legs, another his arms and pulling him gently obviously, lots of feet stomping and trying to push walls down etc, etc!

skidd Fri 09-Sep-11 13:13:30

Thanks Claw, that's really helpful. His teacher at pre-school doesn't think there is a problem, mainly because he is just quiet and maybe a bit withdrawn there, but then all the anxiety etc comes out at home. I think she thinks I am a neurotic nightmare tbh and can be quite patronising towards me. I will talk to her again on Monday though.

I will keep a watch out for sensory stuff - he definitely has some issues but I haven't really worked them out yet so will try and see if he is doing it after too much/too little sensory input.

Will also try the squashing/pulling/wrapping in a quilt - think that might work

Thanks again

Claw3 Fri 09-Sep-11 13:21:34

Skidd, i still have the same problem with ds, teachers dont think its a problem because ds is so quiet and passive, if he was to start screaming and throwing chairs across the room, he would have a problem. By no problem, they mean no problem for them.

Ds directs his anxiety, inwards, not outwards, like your ds and engages in such behaviours. The fact he is pulling out his hair, is enough to suggest that there this a problem, what would he have to do for them to think there is a problem for crying out loud.

www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html this might be helpful, scroll down a bit and it lists all kinds of sensory behaviours.

skidd Fri 09-Sep-11 13:28:22

I know , it makes me so angry and upset that so many people dismiss his problems because, as you say, he's not shouting and hitting etc. Sometimes I feel like I am going mad and imagining it all. How old is your DS btw? Does he have a diagnosis of anything? We are still waiting for a 2nd follow-up appt after an initial assessment 6 months ago

That link is really helpful, thanks. Will print it off and have a good go through of the list

Claw3 Fri 09-Sep-11 13:39:40

I know the going mad feeling all to well, especially when school are not able to identify the same things as see. My ds is 7 years old, he has been engaging in self injurious behaviour, tics, anxious behaviour, whatever you want to call it for the last 3 years, ever since he started school.

He received a diagnosis of ASD in June last year, despite being referred to Paed when he was 2 years old, because of his extremely passive behaviour, he hides difficulties well.

Do you suspect ASD? Who is your ds being assessed by?

Claw3 Fri 09-Sep-11 13:43:42

Skid, i have to go, i have some letters that need to be printed and posted, i will check back later,im happy to help or answer questions if i can smile

skidd Fri 09-Sep-11 20:09:41

Hi claw (had to go too),

He's been assessed by a paed at the local hospital. She said he had a lot of behaviours which are consistent with an ASD diagnosis but she wasn't confident that he would meet the criteria atm. She asked if we wanted to go down the diagnosis route or wait and reassess after 6 months. We said the latter which I regretted immediately, especially as we have had to chase them up for the follow-on appt which is now in Feb 2012 - almost a year after the first appt.

I'm not sure if I think it is ASD or not. He has lots of very non-ASD behaviours: good eye contact, aware of feelings of others, good at imaginative play (although always Fireman Sam related which is his main interest), language is fine I think, certainly not delayed enough for anyone to be concerned.

So I don't know. He sounds a lot like your DS actually - extremely passive and turning it all in on himself - completely heartbreaking to watch. My DS's problems also really took off when he started pre-school last January - before then I suppose I just thought he was very shy and a bit quirky - although I always had unspoken niggling doubts if I am honest.

It's just all so hard, and I feel very isolated - my DH agrees he has problems but I think I worry about it a lot more than him.

Any advice, or just sharing your experiences would be great - it helps just to know others know where I am coming from. I am tired of all the 'oh he'll be fine's from friends in RL who don't see him at his most distressed.

RCToday Fri 09-Sep-11 20:35:41

Oh you poor thing Skidd sad

Im in a bit of a rush now but will post more later

I just want to say I know exactly what you are talking about, your DS sounds the same as mine was at that age and I was made to feel like I was over protective or a bit bonkers, I dont think I had a good nights sleep for about 2 years and it was the first thing I thought of when I woke up in the morning. It was an incredible strain but things did fall into place eventually and my DS manages great now, he is happy, confident and doing very very well

Social stories were great for helping him manage his anxiety, we also had chat time at regular times during the day where he could complain or moan about anything he wanted and I would take it very seriously (even if he just wanted more sweets!) but it helped him calm down to know his worries wouldnt just be dismissed, we also used feeling foams at school (sounds weird but they worked) and picture schedules for home and school

This was all before he had any extra support in school and just done between us and it did help him

I really must go now but couldnt just read your post and run

skidd Fri 09-Sep-11 20:50:43

Thanks RCT for the sympathy, means a lot, and also so great to hear a happy outcome.

I'm not quite sure what you mean by social stories - do you mean stories about starting school etc? Sounds like a good idea. And what are feeling foams?

Also a great idea to have regular chat times although it is hard to give him 1-1 time as I also have a DD (5) and a DS2 (18 months) so it is very rare that I get to spend time, even 5 minutes, with just him.

Om a positive note, a friend gave me an old google ball (think that's what they're called?) and he fiddled with that all afternoon instead of pulling his hair out - hopefully it will last!

AttilaTheMeerkat Fri 09-Sep-11 21:03:03

His teacher at preschool (like many such staff in education) are not trained to recognise any such issues; I would not take their "no problem" line as at all reassuring. SEN is not taught readily at teacher training college.

Is the preschool SENCO any good; is DS on any early years plan at all?. If he is being assessed by outside agencies like the paed then he should already be on Early Years action plus. If he is not I'd be asking the preschool exactly why that is.

My son is a bit older that yours now but in my experience the children who are "quiet" and "passive" also get missed and ignored in a classroom particularly if they have any additional support needs.

You are your child's best - and only - advocate here. You are best placed to fight his corner for him because no-one else actually will do so.

I note your DS is nearly 4; how d'you think he;s going to manage at school?.
If you think he needs further support there I would now put in a request to your LEA for a Statement. IPSEA's website www.ipsea.org.uk have model letters you can use. You neither need a diagnosis or the preschool's permission in order to do this.

skidd Fri 09-Sep-11 21:15:29

Gosh I didn't know that about the Early Years Action Plus Attila, thanks. I am ashamed to say I don't know who the pre-school SENCO is - not being a very good advocate, so-far, am I? blush

I will find all this out on Monday. I might even talk to the head teacher who is lovely, and will be supportive I'm sure.

I am worried about how he'll get on at school next year but also unsure about what sort of support he would benefit from. His main problem is anxiety so I guess maybe someone around to try to keep him calm? Do I need to stipulate all this up front? Will have a look at that link now, thanks

AttilaTheMeerkat Fri 09-Sep-11 21:27:56

Hi skidd,

Posting here re your DS makes you already a good advocate!. When I write advocate I mean that you are truly the best person to fight your son's corner because frankly no-one else will do that for you or him.

In an ideal world re school would you like him to have 1 to 1 within the classroom setting?.

You need to think longer term too; having a statement will give him legal protection in terms of support. Other plans like the one I mentioned earlier are not legally binding and thus support offered can be limited.

If and when you write to your LEA requesting that your son is assessed with a view to obtaining a statement I would cite his anxiety issues and the fact that he is being assessed for possible ASD. You can also state he's already had a hard time at preschool.

SweetGrapes Fri 09-Sep-11 21:35:50

Just to answer the OP...
Dd used to pull her hair out and have bald patches - I just cut it short for a year or so. She has it longer now but any time it seems like she's starting off again I just cut it a bit shorter. Maybe that could work for your ds?

Of course, the haircut itself is a whole different issue!!

skidd Fri 09-Sep-11 22:01:09

Attilla,

I don't necessarily think 1-1 would be ideal - tbh I just don't know what would be best for him. He was OK at pre-school last year for a lot of the time - basically when it was structured (i.e. group time) so I think he will be OK during those times. This is all so new to me, I just don't know what to expect or what the possibilties are. I guess I need to do some serious research!

Swwetgrapes - hadn't thought of that. Might resort to that if the google ball falls out of favour - although it will pain me to cut of his beautiful curly locks...

Claw3 Sat 10-Sep-11 09:32:49

Hi Skid, glad to hear you found something to keep his hands occupied and had an afternoon of no hair pulling. If the ball falls out of favour, there are lots of other fiddle things you can try, blue tac, beads etc. Cutting his hair could be a short term solution, anything like my ds and he will just find a different behaviour to replace it with (hopefully not such a harmful one)

Paed's at the local hospital tend to be developmental paed's with very limited knowledge of ASD. Personally i would ask to be referred to a paed who specialises in ASD. I spent years seeing developmental paed's and ds is very bright and didnt have any developmental delays, so he went under the radar, so to speak. One even told me, when i mentioned ASD to her "There is no way he has ASD and dont let anyone tell you otherwise", her tests were based on stacking bricks and copying patterns etc, which ds could do with his eyes closed.

The minute ds was referred to a paed who specialised in ASD, he suspected ASD immediately and referred on to autism assessment team, ds had a diagnosis in 6 months and i really did feel i had wasted years. I cant stress enough about all the professionals who become involved specialising in ASD, it makes all the difference, especially in the not so blantly obvious cases.

Ds can have good eye contact, especially with me, although this varies in different situations. Ds is also very warm and friendly to others and very aware of feelings, although he finds facial expressions and body language difficult.

The imaginative play had always confused me, i thought ds had brilliant imaginative play, he can pretend a pencil is a sword and makes figures talk to each other etc. I was told it is more social imaginative play ie another person taking part in this play, then i noticed that ds would want that person to play by his rules, that is what the experts meant by limited imaginative play, he couldnt incorporate their ideas into his play.

Speech is another one that got me, i thought ds's speech was fine, just slightly delayed, until a specialist SALT assessed him and found lots of difficulties, again speech and language is very complex and not just about speech and not always obvious.

He does sound a lot like my ds, if you were to met my ds you wouldnt think that kid had autism, you would think he is quiet and quirky. (although a lot of mumsnetters with more experience of asd, could have dxed my son, years before the experts did!!)

I was exactly where you are at when ds was 3 years old, in fact my first thread on here was similar to yours, ds was 3 at the time. I had nagging doubts, but didnt think autism, looking back with hindsight now, all the signs were there.

Im not saying that your ds has autism, just that it is certainly worth getting it checked out.

Claw3 Sat 10-Sep-11 09:47:15

"His main problem is anxiety so I guess maybe someone around to try to keep him calm?"

One of ds's main problems is anxiety, its the underlying cause for his anxiety that needs to be addressed, in ds's case having ASD and the difficulties that go with it. The main cause of ds's anxiety is having to attend school where he is not receiving the right help. The only way for ds to receive the right help, is for him to be assessed by the right experts to identify what his difficulties and needs actually are, this will then help to reduce his anxiety.

(my ds has been assessed by the right people, and recommendations of the right help have been made, school are just refusing to follow these recommendations, but thats a whole different story and hopefully a problem you wont have)

skidd Sat 10-Sep-11 20:24:46

claw your post has made me cry! Everything you describe about your DS sounds so like my DS - that is exactly what his imaginative play is like - he can't incorporate the ideas of others and just carries on with his Fireman Sam monologue, his language is very quirky although his vocab is good - lots of fixed expressions: 'let me see' is every ten utterances or so. For the first time I am starting to believe my worries are not just me being paranoid.

Think I need some time to digest this. How would I go about seeing an ASD specialist? Just ask at the same appt? Or can I ring up and demand one?

You have also said in your second post exactly what I have been trying to explain to DH but haven't been able to articulate - we both know he's anxious and DH thinks that is his problem, but I always say, but if we can find out more about why, then we are better equipped to deal with the problem. I think DH thinks he has social anxiety and that's it, but I feel there is something underlying it - thank you for articulating it so succinctly!

Could you tell me a little about the recommendations made by ASD experts for support in school (if you don't mind) - I think it would help me to understand how I might help my DS.

Thanks so much for all your input - it is helping so much to talk to people who both understand and know (a lot) more than I do.

Claw3 Sat 10-Sep-11 23:43:37

Aww are you ok? i can remember when i first started to post on MN, it was such a relief to find people who understood exactly what i was talking about, i also felt confused and overwhelmed at the same time too. I still feel the same sometimes, even now!

You could ask paed at your next appointment what the process is for dxing ASD in your borough and ask to be referred and literally just ask if they specialise in ASD. You said previously that paed already asked if you would like to start the process, so you probably wont have to demand. In my borough the Paed was part of the autism assessment team and he referred us onto the specialist SALT who did various formal and informal assessments, along with an associate specialist and Educational Psychologist, who just observed the sessions and all agreed yes he met the criteria. My understanding is every Borough do it slightly differently and it varies. You could ask for referals to SALT (who specialise) you might have to go through 'normal' SALT first before a specialist will assess and referal to sensory trained OT.

The help your ds needs would depend entirely on what he has difficulties with. So for example SALT would assess and then make recommendations. OT would assess and then make recommendations etc, etc. I have about 8 pages of recommendations!

But here is a list of the recommendations that ASD assessment team made, bearing in mind that SALT and EP were part of the team, so had in turn assessed/observed him.

A social skills training programme at school to develop his social skills.

Ancillary assistance with dressing and toileting as required.

Adult support to help him understand and complete tasks.

He should do as much PE as he is comfortable with.

Changes in routine should be introduced gradually and explained to him beforehand.

He would benefit from having a quiet place to retire to and a familiar adult to speak to if upset.

Review by SALT

You could ask nursery, if they have ASD outreach, a service which come into school and observe etc. You dont need a dx of autism, just suspect ASD to use this service.

Ask for SALT and OT and ASD assessment should get the ball rolling for starters. Do you have a Health Visitor, they can refer also?

You could also ask the LA for a Stat assessment, maybe not now, but once you have had time to digest, this way they have to work within time limits and assess your ds's needs.

More than happy to help and answer questions, if i can, MN was my life line and still is smile

skidd Tue 13-Sep-11 14:09:09

Thanks claw I am fine smile

Your list is massively helpful, thank you.

Think I am going to take a bit of time to think things over and start doing practical stuff to help him. There's is so much helpful info on this thread, and in SN in general, I think I know where to start now.

Have also been reading the blog autisticson which someone posted a link to in SN - it has really touched me and strikes a lot of chords (especially the bit about his DS being 'stop old ladies in the street beautiful' grin)

Thanks again everyone

Claw3 Tue 13-Sep-11 14:15:57

You are more than welcome Skidd, just keep posting, there is always someone on here willing to answer and the support and experience here is brilliant. Good luck smile

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