Someone from my high school alumni board emailed me yesterday asking for my experiences in getting a diagnosis of Aspergers Syndrome for our oldest son Connor and was wanting some advice for an assessment coming up for her son **** (I'll protect their identities for now) Writing down a shortened version of our experience dredged up lots of sad/anxious times for us as a family and I thought I would copy and paste my email here as a reminder of what we have lived through over the last few years. Aspergers Syndrome is an Autistic Spectrum Disorder which affect social and communication abilities. Please check out http://www.nas.org.uk/ for more information on ASD's and Aspergers.
Laura :o)
Hi ***
I'm sorry to hear that you are having to go through assessments for an ASD, not fun! Connor was 9 before we had a formal diagnosis of Aspergers and it was a long process to get that diagnosis. We couldn't really figure out what was "wrong" with Connor and when we look back now, the old "hindsight is 20/20" thing, there were lots of red flags but because he was our first child we didn't have anything to compare him to. Connor was always "in his own world" of sorts even back when we went to baby & toddler groups. He always preferred playing by himself and didn't really mix with the other kids. He was also exceptionally bright and was reading books to us by 3 years of age. He had started at school in Ottawa the year before we left for Europe and the school was not very good in my opinion because when he would have an outburst or not want to participate they would just throw up their hands and ask me to come get him, nobody ever clued in that something was wrong. The move to Europe was very stressful for him and it seemed that we had disrupted his world so much and he began to have awful screaming tantrum outbursts where Tim and I would have to literally hold him down on the floor. He wasn't in school right away as we were looking for a house for the first 6 weeks and when we did finally settle and put the kids in school it was a nightmare...the school was just bloody awful. The kids were in a foreign language environment but despite that Connor picked up the language easily and quickly, however his behavior was going from bad to worse and we just couldn't understand what was happening to him. We were in a very different culture as well (in Belgium) and the children there are "sheep" who literally have little free will and are told what, where and when to do everything so Connor seemed alien to them! They basically told us that he was a horrible child and we were bad parents...good grief. So needless to say we yanked the kids out of that school and put them in another school whose ethos was loosely based on the "Freinet" model (http://freinet.org/icem/history.htm) and within weeks of being there we were pulled aside and asked if we had ever considered autism...we hadn't!! We got a referral to a "neuropsychologist" who, in my opinion, was a bit of a "quack" but she did think that he showed autistic tendencies which started me doing a lot of research and Aspergers jumped out at me as it did for his teachers. We then had the opportunity to move to the U.K. and we felt that getting back into an English speaking environment would be very helpful as we were dealing with specialists who spoke Flemish and little English in Belgium. Once in the U.K. his new school agreed that autism was a possibility and got the ball rolling with the school psychologist and we got a referral through our GP to a pediatrician and pediatric psychologist in Oxford. It didn't take very long for them to diagnose Aspergers and this was done through a series of physical and psychological evaluations at the hospital and by a home visit by the ped. psych. I think the hardest thing about the assessments is that you have to be brutally honest about the "bad" and not try to justify how bright, wonderful, loving, etc. your child is. I found this incredibly hard because as a parent you want to protect your child and show everyone how perfect they are to you!! You also have to be a fighting bitch to make sure that people take things seriously and follow up on visits, testing, assessments, etc. After getting Connor's diagnosis we then had to get him a "statement of special educational needs (or SEN)" to make sure he got appropriate assistance at school to fulfill his potential. Of course when you are dealing with an education authority its a battle to get them to give you ANY funding to help your child. I did lots of relentless calling, pestering, questioning until we joked that they only gave us the statement to get me off their backs...beware the Momma-bear in protective mode! LOL Even having the statement didn't make things perfect because finding the right people to work with your child's needs can be nerve-wracking too. Plus because we elected to see the psychologist privately due to the waiting lists being 9-12 months, we have not had any follow-up from the ped. psych...I think we have literally "fallen through the cracks". I have had to reach out to some Autism support groups to get help and advice, but at least I have a diagnosis!
Okay...that was a bit long and rambling, sorry about that. My advice to you is to take off your "Mommy-hat" on assessment day and look at your child from the outside. Make sure you focus on his bad days rather than the good ones...very hard to do, I know. They will be asking for a full history on **** from the moment you conceived until the present day. Try to plan for that now and think back to your pregnancy, delivery, babyhood, toddlerhood, milestones, etc as they will be asking you about all of it. When it is your oldest child it is so difficult because you don't have a "baseline" to work from so it helps if you think back now before you get hit with all those questions... I wish I had been warned about his before I went for the first assessment. They will be asking you about his physical coordination, mental abilities, memory, habits, "tics", obsessive behaviour patterns, eye contact, communication skills or lack thereof, demeanor, social skills, school progress or lack thereof, interactions with siblings and peers and any other general concerns you have. I'm sure there's a thousand other things but those are some off the top of my head! Remember to think about the worst case scenarios in this, not if he's had a better week this week than last. It's the bad days that you need to be concerned about, not the good. They are going to want to talk to you and **** together and apart and they will do some tests with him in the form of games, puzzles, mental and tactile activities, etc. There were quite a few things they did with Connor but I can't remember all of them. In our case the ped. psych also came to our home to see Connor in his home environment and to see how he interacted with his parents and siblings. It was during this home visit that it became quite apparent that my husband is probably Aspergers too...oh joy!
I think so far you have done really well to get an assessment booked sooner rather than later and unfortunately it does often come down to he who yells the loudest..... Don't stop yelling, make sure to follow up the assessment with calls, letters, emails, whatever until they give you their thoughts or a diagnosis if one is warranted. You really do have to keep fighting because resources are stretched and nobody wants to spend money so they will put things off as long as they can, trust me on this one!
I hope this helps you prepare for Tuesday and I'll be keeping you and **** in my thoughts. I know this must all seem very daunting right now but you obviously feel in your heart that something is wrong otherwise your wouldn't be going through all of this. I hope they will be able to give you the answers you seek and find the best way forward for ****. Funny thing about Aspies is that it's their peculiarities that make them who they are and you couldn't imagine them any other way! They are still the same smart, funny, loving kids we gave birth to, they just need some help to make it through life!
Wishing you lots of luck and please let me know how it all goes if you get a chance.
Hugs,
Laura :o)
I thought of one more thing and sent a second email...
Hi ***,
Sorry just one more thing I wanted to add to my previous email...I may do this again as things pop into my head...hehe. They will want to know what immunizations **** has had in his lifetime...the MMR debate still rages in the world of ASD's so they will definitely ask you this.
Laura :o)
