Re my 4 year old son

[Noskcaj86]

Hi everyone,

Were having a lot of issues getting help for our 4 year old son who we are 95% sure is on the autistic spectrum, He shows many symptoms. We are pushing for him to be assessed by an educational psychologist but so far we have had no luck. The health visitor says he's to young for an assessment? We want to get him as much help as possible early on but because he's not getting assessed this is proving hard. He sees a peadiatrician every few months for follow up appts and has just had a 2nd EEG which we get results for on 12 september, His first EEG results were normal. He's been having speech therapy since 18months and seeing speech therapist since 1 year for motor skill delays and feeding difficulties. He started attending the language unit at local school a year ago, his language has improved a lot since he started there but he's still delayed. We are still having major issues with his behaviour, understanding, lack of awareness with danger, potty training, anger/lashing out at siblings and me (mum) and dad, hyperactivness... he's on the go non stop all day and dose not get tired until late evening. I find going out with him very difficult, we constantly get comments about his behaviour which i find very upsetting. I cant take my eyes off him for 1 second incase he wonders off with someone or walks in to the road, he literally has no fear of strangers or danger understanding. If I didnt have the other 2 little ones in a double pram he would still be in a pram for his safety. I am really struggling with him and feel we need more help and support than were getting. We want to get him assessed but it's starting to look like were going to have to pay for it ourselfs which means saving up and asking relatives for financial help. My reason for this post is to find out if anyone else has had such difficulties getting there child assessed? And does anyone have any advice for us? There is autism in my side of the family which makes me think its more likely that my son is autistic. We just need some answers were finding it all very difficult, including our eldest child who's 8, he's had enough of getting physically hurt by his brother. Thanx

[Suze]

Do I take it your son is in a specialised educational setting?........are you happy with the help he is getting educationally?..........at you next pead appt pursue with him the need for assessment, take notes/diary you have made regarding his behaviours etc.I,d lay it on heavily about how you feel regarding this.They maybe reluctant to assess as it seems he already has help etc educationally.However thats not to say he should,nt be assessed.A dx can definitely be given at 4 yrs, but they maybe reluctant to do this if they think it is more a language /communication iyswim.Stand firm though and push for an assessment, it with help everyone un derstand his needs etc.Alot of kids have more than one dx, my son has AS/AUTISM, Dyspraxia, dyslexia, sensory processing disorder,auditory processing disorder, and Damp is mentioned on one assessment.You may find your on a long journey getting this sorted, but as long as he is still being seen by the pead and he is at the lang unit then he is getting a level of help and assistance.Good luck suzex

[Noskcaj86]

Hi Suze,

Hes only just turned 4 and at the moment isnt in any educcaton because were moving house/area next month and hes starting mainstream school in the town were moving to. Not sure if he will get any help at new school. He was getting 4 mornings a week at a language unit where he had speech therapy for half an hour a day, but that finished at end of the school year. Were currently getting no help at all with him from anyone other than a phone call now and again from health visitor and pead appt every few months. Im hoping once we have moved we will get more support again. He was getting 4 mornings a week in language unit and had also been seeing someone from disabled childernes team, although that was only once a fortnight. I feel like nobody belives us or listens when we try to explane what he's like. The health visitor sees him for 5 mins and thinks she knows what he's like from that...... Im his main carer (dad works long hours) and I see him 24/7. The only good advice she's ever given me is not to leave 4 yr old alone in a room with 7 month old (of course I already knew this!!) We need more help than were getting just not sure how to get it. feels like a dead end sometimes. Going to tell the pead everything, let him know what all our worries are and take it from there. Only thing is because were moving area soon he will be having a new pead etc so i expect we will then have to start over again and explain it all again. I just wish we had filmed some of his behaviours to show them. Thanx

[Noskcaj86]

Also the only "diagnosis" we have had so far is perception disorder, but that only covers one area of his problems. We know there is much more to it than that!

[Suze]

I would try and get any relevant referrals etc in the pipeline now with your new authority, get your current pead to refer you on to the new one requesting you be seen asap.The new school need to know your concerns etc..they can get on board an ed physch , are you carrying on with lang therapy when you move, don,t let them sign you off get a referral on to another one, try to hang on to them help you have now , and stress/insist that the pead understands how worried/concerned you are , best of luck

[Noskcaj86]

Yes, the speech therapy are asking us to give them our new address so they can forward all his details on to the new speech therapy unit ready for our move which is good. We will keep pushing for him to get assessed and hopefully it will happen soon! Thanx for your help

[Lynden]

If he's already being seen by a paediatrician - what's their perspective? An educational psychologist can't diagnose with autism, can just help advise on the best educational setting for your child. Diagnosis should come via the paediatrician or a clinical psychologist. 4 is absolutely not too young for assessment - my son had his formal diagnosis at 2 and 2 months although there is no questioning his diagnosis as he is severely autistic with additional learning difficulties.

 

Good luck.

Lynne

[Noskcaj86]

Sorry, i mean clinical psychologist... new to all this. Pead is concerened, lots of tests done for metabolic conditions that affect mental development but they all came back normal. eeg done twice for fits, came back normal first time, waiting for 2nd results but i expect normal again. Pead has been watching his development since 1 year but has not suggested any other tests or assessments yet, im just finding it very confusing, never getting any proper answers from anyone. Im going to talk to pead in much more detail this time round and try to get some answers and push for referal. I think ive been scared to ask questions in the past but im going to make sure that I do this time!

[Noskcaj86]

My son use to rock back and forth for an hour at a time as a baby, hed sit in his cot and just rock and rock and be in his own little world, this continued untill 18 mths ish. He also use to bang his head on the floor and walls. He's stopped that now he's older but has other unusual habits which are lots of hand flapping, holding his hand over his mouth and nose most of the time weather were at home watching TV or out in the street. always doing odd twiddling movements with his fingers, also he makes clicking noises a lot with his tongue which he usually flaps his hands at the same time. Do you think this behaviour is stimming/flapping? my other 3 children don't do these things. And does anyone know if walking backwards is normal behaviour for a 4 year old? he does this a lot to and it makes going anywhere difficult! Sorry for all the questions but Im desperate to try and understand it all.

[Noskcaj86]

Oh and the walking backwards and hand over mouth are always combined, and its very hard to get his attention when hes doing this, its like he zones out. thanx

[oxgirl]

Hi Noskcaj86,

I think you will get a lot more help and input once your lad starts school. Have you spoken to the Head of the school he is due to start at yet? If I were you, I would book an appointment with him/her to discuss the difficulties your lad has been having. Once he starts school (when will that be?), then I think the wheels will start being put into motion and, unless they have zero problems with him, then they will probably start the statementing process and things will start happening then.

 

All the best.

 

~ Mel ~

[Noskcaj86]

Hi Mel,

Ive just booked an appt with the school today, they have had all his notes sent over from previous school (language unit) so they have some background info on him. I will fill them in with the rest when we go to appt. He wont be starting untill early october beause were moving area then. So he starts school a month late. Hopefully will get more help when he starts! He needs to be in a pram when were out and about really, he runs across roads and wonders off unless i watch him like a hawk. But i have 2 other little ones so its impossible for him to be in a pram. Any tips on what i can do (other than staying in) we have tryd reins but he doesnt get on with them, he escapes from them and also sits on the floor refusing to move or screaming/crying walking really slowly . I guess this will all get easier once he starts school though, he will e there during the day so i wont have to take him out shopping etc.

Thanx

[Beebee]

My son use to rock back and forth for an hour at a time as a baby, hed sit in his cot and just rock and rock and be in his own little world, this continued untill 18 mths ish. He also use to bang his head on the floor and walls. He's stopped that now he's older but has other unusual habits which are lots of hand flapping, holding his hand over his mouth and nose most of the time weather were at home watching TV or out in the street. always doing odd twiddling movements with his fingers, also he makes clicking noises a lot with his tongue which he usually flaps his hands at the same time. Do you think this behaviour is stimming/flapping? my other 3 children don't do these things. And does anyone know if walking backwards is normal behaviour for a 4 year old? he does this a lot to and it makes going anywhere difficult! Sorry for all the questions but Im desperate to try and understand it all.

 

HI Noskcaj86

I have a 17 yr old with aspergers and have also worked with children with special needs for the last 12 years.

The things you mention above that your son does, do seem quite typical of ASD behaviour ( imo). You often find that whilst children are 'stimming' that they do zone out and it can be extremely difficult to get any response from them. My own son can be so engrossed in things, that i have to put myself right in front of him before he realises im there.!

Walking backwards, tip-toeing and walking with a strange or awkward gait, can all be traits of ASD behaviour.

I hope you manage to get some answers and an assessment for your son soon....the best advice i can give you is .....make yourself a nuisance and Push Push Push..lol..!

Feel free to message me, if you would like to.

Bee

[Noskcaj86]

Sorry ive only just seen this message, Thanx for your support hes getting more help now through school and soon to have an educatonal psychologist assessment so we will see what that shows up. Thanx

[trekster]

Oh and the walking backwards and hand over mouth are always combined, and its very hard to get his attention when hes doing this, its like he zones out. thanx

 

Walking backwards sounds like a sensory issue, hand over mouth probably means he's non verbally saying 'i cant talk now'.

Hope the ed psych can help him. When i had an adult report it helped to see which areas im really good at as well as my weaknesses. Some sort of intelligence profiling. i was also a late talker, needed 6 months of speech therapy so i could talk.