So confused!!!!

[Warringtonmum]

Hi,I'm new to this forum and am looking for opinions and reassurance really! Going through a very confusing time at the moment! I am a mummy to a gorgeous 3 year old little boy who has been referred for assessment as it has been noticed by his preschool that he has poor social skills. Since my DS was 18 months old my husband and myself have had concerns about him, initially it was his lack of speech and extreme mood swings; which we put down to be due to speech problems! At 2yrs old he was referred to speech therapy by our HV, but his "up/down" behaviour was just dismissed by her. He was seen to have a speech delay by the speech therapist, however by the time his actual speech therapy began 6 months later, his speech had got better and he was actually discharged after his 1st session!!! His temper tantrums have I believe got better over the last year, the thing is when he does have what I call a "meltdown" it's major and always in public, most of the time for no apparent reason, therefore I feel like I'm unable to prevent these tantrums from happening!!! He has always struggled going into nursery which initially was only a couple of mornings a week, screaming when I left, so I put this down to separation anxiety! He also has problems going to the toilet, holding his urge to have a bowel movement for days by running up and down screaming until the urge passes, which in turn leads to constipation. We thought that maybe his behaviour was due to being fretful about going to the toilet! Things came to a head recently when he had a complete meltdown at preschool and it took a couple of staff to calm him down, I spoke to his keyworker who suggested they bring someone in to observe him as they were concerned about his tantrums, which they also agreed happened for no apparent reason, one minute he is giggling the next screaming, then back to giggling again! They were also concerned about his poor social skills, as he is only 3 but due to start school next September! He doesn't seem to want to interact with the other children, he would rather interact with the adults or play on his own. If the other kids are playing outside, he would rather play with trains on his own. If another child approaches him to play he tends to lash out at them! My little boy does have an older sister who is 5 years old, and this is why I'm confused! He does play with her, albeit on his terms and he loves cuddling her, infact he is the most loving child, always saying how much he loves me and kissing me! i can't really understand his lack of interest in other children as he does play with his sister. As preschool had raised concerns I contacted my new HV who came around to see him. She has referred him to see a community pediatrician due to our concerns and so we are awaiting an appointment. Meanwhile DS is going to be observed next week in his playgroup setting which will hopefully give me some peace of mind! The HV said to me she always trusts parent's instincts as they know their child the best, my instinct is that my DS is showing some traits of ASD and this has been my instinct since he was 18 months, however, there are days when he surprises me and then I think maybe I'm being neurotic and reading too much into his behaviour! Such a confusing time, are there any other parents out there going through similar experiences at the moment?

[justine1]

Hi

Welcome to the forum,it is a great place to come for advice and support or just to have a moan

 

I am a mum of four and have been in your position twice! My 8 year old was diagnosed with ASD (aspergers)in Dec 2009 the process started in Aug 2009 when he had turned 6 yrs old. I was urged by his school to seek professional help, I had always felt since he was a baby that he was somehow different to his older brother,but tried thinking of every excuse as to why he was different. Either cause he was just a different character,or because my eldest is gifted so maybe I just compared them too much, and when my third son was born I put it down to "middle child syndrome!" Also when he was 4.5yrs I separated from their dad so I then blamed his behaviour on that.Anyway as hard as it was hearing negative things about Sam from his school at least I knew there really was a problem and I was not going crazy. I approached the GP who immediatley said she is 80% sure its aspergers she referred him to a paediatrician who assessed him over two appointments and we got a diagnosis.

 

I then went through the same with his brother Dan. I actually thought of getting a diagnosis for him before I got Sam's however because Sam needed support in school I had to go for his first as it seemed more of a priority. Dan was referred to a dietician just before his 4th birthday (Feb 2010) he had been having trouble eating since a baby and had got worse over 2 years,to the point where he would not eat for a few days and faint! The dietician said his eating is behaviour related and given his brother has ASD she does think he should be assessed. He was first reffered to CAMHS but they couldnt help and was referred back to where Sam was assessed. Dan has speech problems as well, he was then assessed by a multi disciplinary team and came back with a diagnosis in august 2010(he was 4.5 yrs old) that he has ASD/HFA(high functioning autism) he was two and half years behind with interactive social skills, 18mths behind with self care skills and 2 years behind with speech and language.

 

I doubted myself so many times with both boys and often blamed myself. With Dan I feared they would think I am only getting a diagnosis because his brother has one or that I am seeing things that are not there. Especially as unlike with Sam I had no back up from the school. Luckily I was proven to be right and both boys get support at school and are doing well. I have learnt lots of ways to help my boys, in fact all four boys not just the two with ASD, so I feel I am a better parent now. Its been a hard two years but I do feel we are making some(though slow) progress. It is a very up and down journey and thats why groups such as this are so great. I knew nothing about education system for a child with SEN and although I still don't know everything, I have learnt lots from here.

 

It is great that your HV is so supportive, many including myself, have not been so lucky. If he does get a diagnosis at least it is when he is still so young so you can help and support him early on. Good luck.

[Warringtonmum]

Hi

Welcome to the forum,it is a great place to come for advice and support or just to have a moan

 

I am a mum of four and have been in your position twice! My 8 year old was diagnosed with ASD (aspergers)in Dec 2009 the process started in Aug 2009 when he had turned 6 yrs old. I was urged by his school to seek professional help, I had always felt since he was a baby that he was somehow different to his older brother,but tried thinking of every excuse as to why he was different. Either cause he was just a different character,or because my eldest is gifted so maybe I just compared them too much, and when my third son was born I put it down to "middle child syndrome!" Also when he was 4.5yrs I separated from their dad so I then blamed his behaviour on that.Anyway as hard as it was hearing negative things about Sam from his school at least I knew there really was a problem and I was not going crazy. I approached the GP who immediatley said she is 80% sure its aspergers she referred him to a paediatrician who assessed him over two appointments and we got a diagnosis.

 

I then went through the same with his brother Dan. I actually thought of getting a diagnosis for him before I got Sam's however because Sam needed support in school I had to go for his first as it seemed more of a priority. Dan was referred to a dietician just before his 4th birthday (Feb 2010) he had been having trouble eating since a baby and had got worse over 2 years,to the point where he would not eat for a few days and faint! The dietician said his eating is behaviour related and given his brother has ASD she does think he should be assessed. He was first reffered to CAMHS but they couldnt help and was referred back to where Sam was assessed. Dan has speech problems as well, he was then assessed by a multi disciplinary team and came back with a diagnosis in august 2010(he was 4.5 yrs old) that he has ASD/HFA(high functioning autism) he was two and half years behind with interactive social skills, 18mths behind with self care skills and 2 years behind with speech and language.

 

I doubted myself so many times with both boys and often blamed myself. With Dan I feared they would think I am only getting a diagnosis because his brother has one or that I am seeing things that are not there. Especially as unlike with Sam I had no back up from the school. Luckily I was proven to be right and both boys get support at school and are doing well. I have learnt lots of ways to help my boys, in fact all four boys not just the two with ASD, so I feel I am a better parent now. Its been a hard two years but I do feel we are making some(though slow) progress. It is a very up and down journey and thats why groups such as this are so great. I knew nothing about education system for a child with SEN and although I still don't know everything, I have learnt lots from here.

 

It is great that your HV is so supportive, many including myself, have not been so lucky. If he does get a diagnosis at least it is when he is still so young so you can help and support him early on. Good luck.

Thanks for that Justine1! I feel exactly the same, never underestimate parental instinct!!! The first HV last year was so patronising to me but this new one is fab! Just want to do the best by my boy and it must be so frustrating when professionals do not listen!!!I too somehow see my DS as different to his sibling, can't quite say exactly, has strange mannerisms, facial expressions sometimes and the way he speaks with a funny tone, even the way in which he walks with a slight skip, which at 3 years old is quite cute, but not sure how it would come across at school age! I'm so pleased that you eventually were proven to be right and that you are now getting the support needed

[Sally44]

Our son was exactly the same.

At nursery he never played with the other children.

He did not want any child to approach him when playing with something and would scream at them or get absolutely distraught if they even touched it.

Attempts by the nursery to introduce other children to 'share' toys did not work. He got so upset he would throw things at them!

He would cry, refuse to walk, to the extent that I had to take him to nursery in a pushchair. Up until pre-school age, he seemed okay to actually go to nursery because at that age they are allowed to amuse themselves.

At pre-school when he was expected to sit down with the other kids for carpet time, he would just ignore them and wander around the classroom.

He would go to the loo, but would scream if anyone looked at him whilst on the loo (the nursery had a policy of an adult always going with them).

 

He played with his sister okay, he hugged and kissed me. His speech was very poor [two words joined together aged 2-3], then at 3+ he saw his first Walt Disney video and from then on he could watch it over and over and could learn the whole dialogue, and repeat it verbatim, for hours!

 

My HV did not have concerns, and unfortunately the nursery did not allow her in to observe.

 

I went to my GP about his apparent deafness [non-response to his name being called when engrossed in some activity he liked], and constant spinning, and extreme mood swings for no apparent reason. The GP said that 'all children are different and that if school have concerns they will refer him'. I feel this was a total disaster for my son because he started school aged 4.5 years with absolutely none of the skills needed in school. He had poor expressive and receptive speech, no social skills, no self help skills, had never coloured or picked up a pencil and would scream is encouraged to do so.

 

He was referred by school after 6 months to the SALT, who forward referred him to the communication clinic at the local childrens hospital, and he saw a clinical psychologist and developmental paediatrician experienced in diagnosing ASD.

 

The SALT told me to expect a diagnosis of ASD after her first assessment. She said he had a speech disorder [as well as a delay]. He had problems with pronouns, was echolalic. She also attempted to play with him and she said that his reaction to that demonstrated ASD behaviour. So maybe you need to ask the SALT about his social communication and play skills?? It is part of the SALT's remit - unless that part is going to be covered by some other professional?

 

I made a video of my son 'playing' with his sister and me. His play skills have developed more since then. But even then I thought he was using imagination. When I could see myself, after it was explained to me, that my son was not using imagination, he was using rote learnt scripts from TV and was trying to re-enact things from Doctor Who etc.

 

Now he does have some imaginative play, and he does have some theory of mind. But his social skills, emotional literacy and regulation are still very poor.

 

My son also has alot of sensory issues, which seem to have been the major cause of his past and present upsets. Or, for some children, it is when a need for a rigid routine or something expected does not happen eg. being given the green cup instead of the blue one etc.

 

My son did not cope in his mainstream primary school. He is currently [age 10] out of school, and has been for the last 10 months. We are waiting to hear if we have got an ASD specific placement, which I think is the only placement he will cope in.

 

Have you started the Statementing process yet?

You can ask your local authority to carry out a Standard Assessment for a Statement of Special Educational Needs. It does help if you have a diagnosis. So at your first appointment I would ask them what observations/assessments they are going to do, what professionals will see him and where will they see him [in clinic or in nursery as well], are they experienced in diagnosing children with an ASD. How long before a diagnosis is made.

 

The important part is to get him the right kind of placement for primary school. If he is struggling socially at nursery, then it will be worse in primary school because more demands will be placed on him.

 

Some primary schools have an ASD unit attached to them. Some special schools have ASD students.

 

Anxiety is a big part of an ASD and his difficulty with toiletting maybe down to anxiety issues??

 

Most LAs need a child to have a Statement of SEN before they are allocated an ASD Unit or Special School placement. And Statements take 26 weeks from start to finish, and the LA may refuse to assess, may assess and refuse to issue a Statement, may issue an illegal Statement and you need to appeal it. And each of those stages takes time. So you don't have a long time to sort out his placement.

 

Go with your instincts on whether you think he would cope in a mainstream primary class, with no individual support, with around 30 other kids etc.

 

Professionals may encourage you to 'have a go' mainstream. They did that with me. BUT the problem you have is that IF your child does not cope and you ask for him to be moved into an ASD Unit, you will find that it is full. Because there are not enough places for all the children that need that kind of environment. That is what happened to me. And it has taken us years and years of fighting to try to get him supported, and now he isn't even able to attend school and has a further diagnosis of an Anxiety Disorder.

 

I would have a serious talk with all the educational professionals about what kind of placement he will need.

 

And just because a child is speaking, does not mean they don't have a speech disorder.

 

Can he talk on topic. Can he hold a two way conversation. Can he give you information and you understand what he is trying to tell you. Does he give totally unrelated answers to questions. Does he repeat words or phrases. Does he use pronouns correctly. Does he ask the same type of questions over and over? Does he appear deaf. Can he stop doing something and move onto something else when asked. Can you easily leave the house or turn off the TV. Can you do things differently without him getting upset. How is he when out shopping or in the supermarket?

[Warringtonmum]

Thanks Sally44 - everything you have said about your son is so similar to my DS! About the imaginative play, myself and the HV saw him playing with his fire engines and she pointed out that he has imaginative play, but from what you've just said, and it definitely makes sense, he could actually just be re-enacting Fireman Sam (his fave program. As far as his speech is concerned, he has a very large vocabulary, but doesn't always pronounce words correctly, or others may be unable to understand him in the same way as I do! He does tend to repeat phrases etc. Preschool have pointed out that he is very good with numbers, counting to at least 25 (and backwards) and identifying numbers out of sequence, which they felt didn't tie in with his lack of social/emotional development! He seems so young in one respect, but intellectually above average for his age! I will have to see what next week brings, see what the preschool's Early Years Adviser says. She is going to observe him in the setting and then liaise with my HV! It will be interesting to see what she says. Could you tell me what SALT is please?

[Sally44]

Thanks Sally44 - everything you have said about your son is so similar to my DS! About the imaginative play, myself and the HV saw him playing with his fire engines and she pointed out that he has imaginative play, but from what you've just said, and it definitely makes sense, he could actually just be re-enacting Fireman Sam (his fave program. As far as his speech is concerned, he has a very large vocabulary, but doesn't always pronounce words correctly, or others may be unable to understand him in the same way as I do! He does tend to repeat phrases etc. Preschool have pointed out that he is very good with numbers, counting to at least 25 (and backwards) and identifying numbers out of sequence, which they felt didn't tie in with his lack of social/emotional development! He seems so young in one respect, but intellectually above average for his age! I will have to see what next week brings, see what the preschool's Early Years Adviser says. She is going to observe him in the setting and then liaise with my HV! It will be interesting to see what she says. Could you tell me what SALT is please?

 

 

 

It is very typical of children on the spectrum to have what they call a "spikey profile" eg. good in some areas and poor in others. My son's percentile scores range from <1st percentile for motor planning to 92nd percentile for some non-verbal skills, which place him way above typical.

 

My son cannot read or write, yet recently came up with a design for something that is bordering on "inventor" level. And I actually looked on the government patent website and found that a corporation had patented the same idea as my son in 2007.

 

My son could order numbers 1-10 when he was 2. He also managed to get my keys and unlock the house door and get into my car and start the engine at age 2.

 

My son has ASD and also Dyslexia and Dyscalculia and Dyspraxia and Sensory Integration Disorder, as well as some other diagnoses.

 

With his number recognition it maybe he has rote learnt the sequence. Or if he does have one to one correspondence [ie. actually understandings that the number 5 means 5 items], he maybe gifted in maths - but too early to say really. But I just wanted you to know that children on the spectrum can have incredible skills, as well as some significant difficulties. My son struggles to tie his shoe laces. He cannot ride a bike. He can play computer games for 14+ year olds. He can build lego models better than anyone I have ever met.