Parent of a child who may have Aspergers, advice please

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EmmaP
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21 May 2013, 5:37 am

Good morning all,

I have been doing quite a bit of internet research lately about Aspergers and, in all honesty, am still quite confused. I was hoping that a fellow parent may be in a position to give me a little advice.

It is probably prudent to give a little background information. My name is Emma and I have a beautiful five year old son called Sam. We, as in myself, partner and extended family have never had any concerns about Sam's development. However, for a few months now Sam has been going to speech therapy. Basically when he started at primary school his teacher was concerned about his speech. We visited our GP who had no concerns. We paid privately for therapy and his assessments came back in the 'normal' range but his speech was at the lower end. So the lessons continued.

At our last appointment his speech therapist said she believed he has Aspergers. She told me to google this and that when i saw the "symptoms" it would become clear to me that this described Sam. She said that she did not feel it would be beneficial to him to be formally diagnosed but would enable her to structure her appointments with him better.

I googled Aspergers and do not feel that it describes Sam at all. In fact after looking at the DSM IV criteria I couldn't see any one which I could safely say 'yes that's Sam'. His eye contact wouldn't be the best but this is a trait which runs in my family and my mum, brother and I are all told our eye contact is atrocious!

So here I am a week or so later as confused as I was that Saturday morning. My feeling is that it would be much better for a formal diagnosis to be made? I don't see how it would be beneficial to say that Sam is on the Spectrum without a clinical psychologist seeing him.

My family are extremely upset with the therapist and think she is saying this as a way to continue the lessons (she had previously indicated two more lessons and that would be about it). They find it hard to believe that in an extended family which includes three nurses (one of whom is a mental health nurse) and four teachers all of whom have spent a considerable amount of time with Sam, that this would not have been noticed (although i find that sometimes when you are close to the situation it is easy to miss things).

I am not here saying yes please tell me my son is 'normal'. I would have no problem if my son had Aspergers. I love Sam unconditionally and nothing in this world would change that. If he has Aspergers I would move heaven and earth to ensure I give him the best resources possible. My confusion is what to do now. My family think I should simply stop his appointments and leave it at that. My partner thinks likewise. My doctor has previously said he has no concerns over his development but i am wondering if it is wise to take him back and, despite his views, ask to be formally referred for formal testing?

Any advice or views will be so gratefully received.

Thanking you all for taking time to read this rambling post.

Emma



Last edited by EmmaP on 21 May 2013, 6:25 am, edited 1 time in total.

AgentPalpatine
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21 May 2013, 6:07 am

Emma, welcome to WP. while I cannot speak to your question, I would suggest that you indicate what country you live in. It may make a difference in the advice that you recieve.


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Kuribo
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21 May 2013, 6:15 am

If there is a possibility that your therapist is right, then I strongly recommend that you seek a formal diagnosis, as this will give him access to any support services he may need throughout childhood and adolescence. Good luck with whatever you decide to do. :)

P.S. The term "Asperger's sufferer" is frowned upon by many here. Just letting you know.



EmmaP
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21 May 2013, 6:23 am

Eeeeek thanks Kuribo. I didn't realise and obviously had no intention of offending anyone but clearly have a lot to learn.

Location is a very wise idea AgentPalpatine i live in a semi-rural community in Ireland.



The_Walrus
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21 May 2013, 7:10 am

Welcome :)

I'd probably go back to your GP (or equivalent) and ask whether he/she thinks it would be worth referring Sam to a specialist for diagnosis.

The worst case scenario is for a diagnosis to be missed and Sam to struggle without help or without knowing why he's different. I'd probably want the doctor to check just in case.



rapidroy
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21 May 2013, 8:45 am

Its possible most of your family including you is on the spectrim to a degree if Sam comes back positive, perhaps thats why you don't see what the therapst sees, just saying. AS becomes much more visable as the child gets older.



sixstring
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21 May 2013, 9:19 am

"They find it hard to believe that in an extended family which includes three nurses (one of whom is a mental health nurse) and four teachers all of whom have spent a considerable amount of time with Sam, that this would not have been noticed"
My family on my father's side (from whom I'm pretty sure I inherited it) has seen its share of autism (a cousin of mine was diagnosed early on), I've had tons of teachers saying I was smart but lazy, tons of people kept calling me weird, I've seen multiple therapists, and it still took until I was 26 to be diagnosed.

I'm not saying your son definitely has autism, but a lot of times it's hard for people surrounding the person to see the autism.



Tori0326
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21 May 2013, 9:36 am

I'm pretty much in the opposite position of you, where my 5 year old is going to speech therapy and I do suspect my son has Aspergers (as I do) and I'm not certain if I should share my belief with his speech therapist because it could lead to them suggesting he get officially diagnosed and subsequently labeled as being special needs. I'm not sure that's in my son's best interest. I'm also not sure how easy it is to diagnose in very young children. It's hard to say what are normal oddities that they will grow out of and what behavior will persist, like the eye contact, poor social skills, hypersensitivity, etc.

I'm also convinced that it is a hereditary condition as it's pretty clear my father and his mother both had undiagnosed Aspergers as well.



1000Knives
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21 May 2013, 9:41 am

I got suspected of a "developmental disorder" at around that age. But then I checked out sorta kinda fine, except I rambled on forever about Star Trek and had balance issues. I wish I got DXed back then. But whatever, just have a terrible horrible life to deal with now.

If you don't like the speech therapist's DX, go for a second opinion somewhere else.



Tori0326
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21 May 2013, 11:52 am

1000Knives wrote:
I got suspected of a "developmental disorder" at around that age. But then I checked out sorta kinda fine, except I rambled on forever about Star Trek and had balance issues. I wish I got DXed back then. But whatever, just have a terrible horrible life to deal with now.

If you don't like the speech therapist's DX, go for a second opinion somewhere else.


I'm not sure why you think being diagnosed then as opposed to now would have a direct impact on the quality of your life now. Is it even related to having Aspergers? I can't say I've had a horrible life not knowing I had it until I was 39.



Marcia
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21 May 2013, 12:08 pm

I'm inclined to think that the therapist is saying this so that you will continue paying her for lessons.

My reasons for thinking this are:

She seems not to want you to have your son formally assessed.

You and your family haven't had any concerns about your son. Even allowing for autistic traits in family members, it would be extremely unusual/impossible for as many people as you mention not to notice that a child was "odd".

The school have only indicated an issue with his speech, not any other communication or behavioural issues.

You have now researched Asperger's and cannot see that it applies to your son in any way apart from the issue of eye contact.



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21 May 2013, 12:46 pm

I'd suggest that your son has the last two lessons and then the therapy is discontinued. You might be best to wait and see if any issues crop up in the future. If they do may be then would be the time to seek a view from the psychiatric profession.



Tori0326
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21 May 2013, 1:41 pm

I don't know if it's the same over there as it is here in the U.S. but my ex's health insurance wouldn't pay for speech therapy so I wound up going to the public school system for speech therapy. Perhaps they have that available there also and you could go that route if he still needs speech therapy. Whether or not her assessment is correct, it is a little odd she waited until now to bring it up.



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21 May 2013, 1:49 pm

You should probably get him evaluated by a professional who specializes in ASD. Have you asked the speech pathologist specifically what traits she sees in your son that are indicadive of ASD? You could try asking her and see if you agree with what she says. ASD overlaps with Semantic/Pragmatic language disorder. A lot of people with ASD also meet criteria for this but it can occur alone. LINK-SYMPTOMS



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21 May 2013, 3:19 pm

Hi Emma I am from Ireland also my son was dx with AS by a private speech and Language therapist of course it was not formal and I had to wait for local services she was correct in her assessment. She specializes in Autism Spectrum Disorders a lovely person she works with CAMHS Child and Adult Mental Health Services but does private work also. She is based in Cork if you want her details PM me.

A little of my background, I suspect my son ADHD as other members had been dx. Teachers, professional local services etc said my son had no issues. He was very good at masking them I took him private got dx for ADHD but the school filed it away. To get services/support in school the Local service had to dx him so I had a battle on my hands. I decided to find the best child psychiatrist I was referred to Prof Michael Fitzgerald Dublin if you have not heard of him google. He confirmed dx of ADHD and also advice me to go the speech therapist in Cork for a semantic\pragmatic language assessment. I googled it and Aspergers kept coming up I read the DMS and I thought no doesnt fit. I arranged an appointment with the SLT she had a waiting list. I researched Aspergers came on this site and from what other parents experienced I started see theses behaviours in my son.

The SLT confirmed Aspergers and Dr Fitzgerald gave him the dx I then still had a battle with local services but the local ASD confirmed the dx he now gets supports. Most people would not see my son as autistic this can be a disadvantage at times. Good Luck it might be worth doing the assessment to confirm or not as you are on this site you probably wont be able to get on with you life till you get an answer.


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